Tonight was orientation for the NICU parent host program that I am volunteering at our NICU Brielle was in for 98 days! I was nervous about going back in the "rooms." Nervous about what I would say to the parents. My Friend (Karen, I know you've heard me talk about her before, Kyless mom!) are both volunteering! So her and I were sitting outside the pediatric floor having some nice girl talk. Joan, one of the retired nicu nurses, asked if Nurse Teri was up there yet. I asked her if she was working, and she said she believed so! I told her to send her up if she was working! I had not seen Teri since we left! For those of you that dont remember, Teri called me the night of Aydens passing to tell us she was thinking of us, and Happy Birthday to Brielle! She is soooo sweet! There are SO many sweet nurses up there! This is another "perk" to the NICU parent host program! I get to see my "family" AKA past nurses, doctors, respiratory therapists. This I am prety excited about! These ladies (Teri) Has seen me cry when I didnt want to go to my baby showers because I felt like I shouldnt have "fun" and needed to be with my baby not being showered, they listened to my concerns, experienced the highs and lows of our stay! Some of the nurses have spent more time in the NICU with us than some of our family spends with us. (Not that its bad, thats just how it is!) Alot of these nurses have such special places in our hearts that I dont think they know they do. I can ramble off atleast 10 nurses who have touched my life in such ways!
(P.s) Teri or Terri? I never know if your one or two Rs hehe! SORRY! You know who you are!! Cuz you said you still read :) :) :X :X
Ticker
Thursday, September 22, 2011
Tuesday, September 20, 2011
1st Birthday (adjusted)
Funny story before I get onto the juice! I was laying on the floor and Brielle was tackling me and "getting me." She tooted, and I looked at her and said "BRIELLE, did you toot???" She laughed, so I laughed. Well then she tooted again and I laughed harder. She started trying REALLY hard to toot to get mom and dad to laugh. It was hilarious!! She learned what got a rise out of mom and dad so she tried hard to do it over and over to get that reaction she likes. (Good learning skill, not so much with the farts!) Now not that we think its cute when she toots, it was just the inital when I asked her and she giggled, like YUP Mom, I know! hehe
Her new words are Dog and yuck! I love it! She LOVES to give kisses! Open mouthed and tongue and all.... She has learned to break out of my homemade baby gate of a toy chest and her "lazy boy". Shes too damn smart for her own good! She is sleeping thru the night and has 8 teeth now!! She eats pretty much any table food we present to her. We are weaning her off the bottle and to the sipper cup! hmmm lets see what else...O she says Bubba now (in regards to her bottle), ga ga ga, mama, duh, duh, Still not waving, but its coming. She is pulling up on EVERYTHING! and scaling furniture! Still not brave enough to let go, but mamas not pushing that or walking! Shes growing up SO Fast!! I have NO clue where these last 15 months have gone! :/
So Im always a day behind! Got to get more on top of this! Yesterday was Brielles original due date! So heres some stats.....
original due date: September 19, 2010
Actual birth date: June 1, 2010
Weeks premature: 16 weeks (Born at 24 weeks 2 days)
Birth weight: 1 lbs 6.6oz 12" long
Weight at 1 year old adjusted: 18lbs 13oz 26.75" long
98 days in the NICU
Has been home 378 days to date!!!!
We had Brielles 15 month appointment yesterday as well. He said she is a miracle superstar! Of course she is!!
We also had occupational therapy yesterday. I was concerned as she will not point with her left finger but constantly points with her right. She also slouches ALOT while sitting and while sitting her left knee and or foot are in the air slightly. So I questioned the therapist. She then took off Brielles shirt to get a clear look at her back muscles. She found that Brielle is not using all of her back muscles. When you look at your back, you have the two bones (I call them shoulder bones) and they should both equally "glide" down in a half moon to your side. Well Brielles right looks perfect, her left sticks out. Also she found that her neck muscles are also not being used properly. Her left side is much different in size than her right. The muscles that we use to shrug our shoulders, she can not do that. Upon reviewing her even further after this "diagnosis", she had her bang two balls together. A child should bang two toys together by bringing both hands together in the midline and bang the toys. Brielle leaves her left hand at her side and brings the right hand to the left hand without moving her left. All of our concern is on her left. Since Brielle has PVL on her right, it causes Cerebal Palsy on her left side. So of course all of this "left hand, left leg, left muscles etc etc." is putting up a red flag.
SO this is exactly what was written on her "progress" sheet from the OT. "Mom mentioned she is not pointing with her left. Upon evaluating her left arm, left traps are asymmetrical as are left rhomboids. Tight left supination/pronation. Uses left hand actively and grasps/releases objects. Holds left thumb against side of hand but not tight. Open palm when crawling."
So I questioned if this is a CP "thing" and she said yes :/ The older she gets the clearer her CP is going to start showing thru. But as OT stated, Brielle is young enough and we are watching her like a hawk and that will benefit us. Because we can correct as much as possible what needs to be corrected.
From here there a few things that we will try. First we are doing muscle exercises. We take her elbow in one hand and her wrist bones in another and turn her hand over without turning the elbow as well. As if we are turning her hand over to put something in it so to speak. Next we are putting an ace bandage on 3 fingers of her left hand leaving only her pointer finger and her thumb out so she can still finger grasp with the two to pick items up. While the ace bandage is on, we restrain her right arm as much as possible. If there is no improvement in that by Oct 4, she comes back and places Kinesio tape on Brielles back muscles. And then if that doesnt do anything, we will put a hard cast on her arm to restrain is so she HAS TO use her left arm more.
I am not getting too excited about all of this. Awhile back, we thought she would need thumb splints for her tightness in her thumbs and we worked really hard to loosen those, and it worked! Dodged the thumb splints. So it is what it is.
I feel extremely blessed to even have Brielle. She could have not made it in the NICU, I could have miscarried like my first pregnancy, or she could have passed with her brother. She has defeated quite a few odds already!! Having only a 39% chance for survival, I'd say she is a miracle. I could not ask for a more perfect little girl. She brings Josh and I such joy in our lives. She puts smiles on our faces every minute. She is the love of my life.
Her new words are Dog and yuck! I love it! She LOVES to give kisses! Open mouthed and tongue and all.... She has learned to break out of my homemade baby gate of a toy chest and her "lazy boy". Shes too damn smart for her own good! She is sleeping thru the night and has 8 teeth now!! She eats pretty much any table food we present to her. We are weaning her off the bottle and to the sipper cup! hmmm lets see what else...O she says Bubba now (in regards to her bottle), ga ga ga, mama, duh, duh, Still not waving, but its coming. She is pulling up on EVERYTHING! and scaling furniture! Still not brave enough to let go, but mamas not pushing that or walking! Shes growing up SO Fast!! I have NO clue where these last 15 months have gone! :/
So Im always a day behind! Got to get more on top of this! Yesterday was Brielles original due date! So heres some stats.....
original due date: September 19, 2010
Actual birth date: June 1, 2010
Weeks premature: 16 weeks (Born at 24 weeks 2 days)
Birth weight: 1 lbs 6.6oz 12" long
Weight at 1 year old adjusted: 18lbs 13oz 26.75" long
98 days in the NICU
Has been home 378 days to date!!!!
We had Brielles 15 month appointment yesterday as well. He said she is a miracle superstar! Of course she is!!
We also had occupational therapy yesterday. I was concerned as she will not point with her left finger but constantly points with her right. She also slouches ALOT while sitting and while sitting her left knee and or foot are in the air slightly. So I questioned the therapist. She then took off Brielles shirt to get a clear look at her back muscles. She found that Brielle is not using all of her back muscles. When you look at your back, you have the two bones (I call them shoulder bones) and they should both equally "glide" down in a half moon to your side. Well Brielles right looks perfect, her left sticks out. Also she found that her neck muscles are also not being used properly. Her left side is much different in size than her right. The muscles that we use to shrug our shoulders, she can not do that. Upon reviewing her even further after this "diagnosis", she had her bang two balls together. A child should bang two toys together by bringing both hands together in the midline and bang the toys. Brielle leaves her left hand at her side and brings the right hand to the left hand without moving her left. All of our concern is on her left. Since Brielle has PVL on her right, it causes Cerebal Palsy on her left side. So of course all of this "left hand, left leg, left muscles etc etc." is putting up a red flag.
SO this is exactly what was written on her "progress" sheet from the OT. "Mom mentioned she is not pointing with her left. Upon evaluating her left arm, left traps are asymmetrical as are left rhomboids. Tight left supination/pronation. Uses left hand actively and grasps/releases objects. Holds left thumb against side of hand but not tight. Open palm when crawling."
So I questioned if this is a CP "thing" and she said yes :/ The older she gets the clearer her CP is going to start showing thru. But as OT stated, Brielle is young enough and we are watching her like a hawk and that will benefit us. Because we can correct as much as possible what needs to be corrected.
From here there a few things that we will try. First we are doing muscle exercises. We take her elbow in one hand and her wrist bones in another and turn her hand over without turning the elbow as well. As if we are turning her hand over to put something in it so to speak. Next we are putting an ace bandage on 3 fingers of her left hand leaving only her pointer finger and her thumb out so she can still finger grasp with the two to pick items up. While the ace bandage is on, we restrain her right arm as much as possible. If there is no improvement in that by Oct 4, she comes back and places Kinesio tape on Brielles back muscles. And then if that doesnt do anything, we will put a hard cast on her arm to restrain is so she HAS TO use her left arm more.
I am not getting too excited about all of this. Awhile back, we thought she would need thumb splints for her tightness in her thumbs and we worked really hard to loosen those, and it worked! Dodged the thumb splints. So it is what it is.
I feel extremely blessed to even have Brielle. She could have not made it in the NICU, I could have miscarried like my first pregnancy, or she could have passed with her brother. She has defeated quite a few odds already!! Having only a 39% chance for survival, I'd say she is a miracle. I could not ask for a more perfect little girl. She brings Josh and I such joy in our lives. She puts smiles on our faces every minute. She is the love of my life.
Friday, September 9, 2011
Just a year ago..........
A year ago Yesterday actually, was the year marker of the day Brielle stopped breathing and gave us all quite the scare. It is also the day that Jenny Echols, the 911 dispatcher, walked into our lives. She actually lives just down the road from my mom, so we have kept in touch this whole time. We actually got to see her Wednesday for an hour by chance! Wed. I had not even given it a thought that it would have been a year the next day to mention it to her. It is soooo crazy to me that this year has gone by this fast!! It seems like just yesterday I was laying in the hospital bed fighting to keep my babies in 20 more weeks. Even tho I only made it 4 weeks of the 20 weeks, I am in awe of how far we have come. This little girl amazes me daily! She has overcome almost every odd put in front of her. We were told alot of scary statistics when she was born (Even well before she was born) and we have a happy, healthy, 24 weeker. You could not tell she was a preemie if I didnt tell you. She is doing everything she should be doing for her adjusted age of almost a year. In 10 days (sept 19) would have been her original due date. Instead, the twins thought June 1 would be a good birthday!
Today, we are on our first family vacation as a family of 3. I could not be happier. She is so much fun and such a delight to have in our lives. Her smile lights up a room and lights up my life as well.
Today, we are on our first family vacation as a family of 3. I could not be happier. She is so much fun and such a delight to have in our lives. Her smile lights up a room and lights up my life as well.
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