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.
Friday, August 19, 2011
Loss
I am numb. I am crushed. I am hurt. I am torn. I am so very sorry. My cousin, Amanda, lost her 9.5 month old Wednesday to cardiomyopathy. Jenna had an enlarged heart. She was too sick to receive a heart transplant and she grew to weak to keep fighting. After a very strong 6 week fight she just could not fight no longer. My heart breaks for my cousin. 14 months ago, I was planning a funeral for my son (with tons of help from my dad). It was heartbreaking for us and we had never "met" Ayden. I never held him. Never felt him breathe. Never played with him. Never seen him smile or giggle. Amanda seen and heard and felt all of those things. I can not imagine how tough this is on her. She lives in Indiana and we are in Wisconsin. She is coming home Monday and I can not wait to hug her. I can not get her off my mind. I keep thinking how unfair it is. But in the same sense, Jenna is at peice. No more tubes and wires. No more struggling. O how I wish that sweet baby could have gotten a transplant and this ending was so different. Watching your child struggle for over 6 weeks and then have this ending is so unbearable. I have a friend, Karen McGlin, who lost her daughter in March to cancer. She is such a strong woman! She looks at things from the positive side. I dont know how she does it, but she puts me in my place so to speak. Stop thinking negative and start looking at the good of the outcome. Her and her daughter, Kylee, have left such a huge footprint in my life. I never got the pleasure of meeting Kylee, but if she was half the little girl her mom is, I know she would have been wonderful, amazing, caring, loving, and courgeous. I am blessed to have her in my life.
Sunday, August 14, 2011
NICU picnic
The end of May, I created a NICU group for all familes who have ever used the NICU Brielle was in. I have been struggling with the loss of Ayden and the preemie side of Brielle and having another baby. I felt it was important to me to have others around me how "get it." So I started a group on Facebook and it is currently up to 118 members and grows daily! Two moms who were also in the NICU that I have become friends with, Tracey and Nichole, helped me organize a NICU family picnic. The picnic was today! It was very successful! We had 140 people RSVP. We had "Care bears" that passed out tattoos and band aids that said stuff like "Stuck on a miracle." "I *heart* Dr. Debbie" (Since one of the Drs (debbie) came today) "Preemie proud" "Nurses rock" etc. We had 2 bouncy houses, tons of food and great conversation sharing our stories with others. We had a scrap booking table set up that was "Look at me now" themed. We asked each parent to bring a newborn nicu picture and a current picture and then we put them up on the wall so everyone could read the stories. Then we will put them in a book and donate to the NICU. It was alot of fun!! A few nurses even came! And of course, Dr. Debbie! :)
Tuesday, July 26, 2011
Break please?
Brielle has been crawling further and further day by day! Its so great! The baby proofing, not so much! Everytime I think everythings up and out of reach, she finds one more thing she isnt suppose to have! Like a bird seed!?! Where does she find this stuff!!! She says mama, MA, Mom, all the time. Josh is getting jealous and now tells her to say da da. I woke up this morning to her playin in her crib and saying "mom" on the baby moniotor. How freakin great is that?????? The weather here has been unbearable! Humid and stick and just plain hot! With Brielles chronic lung disease its hard to take her out for any period of time. She gets very wheezy and then we have to give her a breathing treatment of Albuterol. Brielle has started to shake her head (and whole body for that matter) "yes." Now Im not sure if she just likes to do it, or if shes actually trying to say yes, but its quite funny. I then shake my head no and she thinks its a hoot and giggles. O man, I could hear those giggles all day!!
Brielle was re-evaluated with Occupational, Physical, Speech, and early intervention last week. Basically they come in and set "goals" for her to reach over 6 months. They usually dont renew this early, but she reached all her previous goals before the 6 months :) Thats my girl! Early intervention actually will not see her anymore since she is doing so well! The other 3, I have requested to continue. I am SO afraid that I will miss something as time goes! Technically she is approved til she is 3, but we can decide to discontine earlied, increase or decrease how much they each come etc. She has proved everyone wrong since the gecko, but I still want the eyes to watch her. They also give me a lot of good tips and pointers and games to do with her that really get her going. I always say, "DOH mama! Why didnt I think of that!"
Tomorrow, if it doesnt rain! UGH! Brielle is in a childrens parade! We decorate her stroller and march downtown to a park where they have cake and activities for the kids to celebrate the 10th birthday of Childrens Hospital who played such a big part in our lives this past year!! I am pretty fricken excited!! I am dressing her up as my buttefly. Same as her birthday party, she was a little fragile caterpillar that emerged into a beautiful butterfly! I got a headband and made her little antennas, she has wings, I have flowers to go all over her stroller! Im pumped!! Please rain, GO AWAY!!
Break please for the Driessen Family (My maiden name). 1st, My cousin Amandas baby, Jenna, is 9 months old and ended up in the hospital mid June. Determined that she has a genetic heart condition and needs a heart transplant. She has endured more than any baby should ever have to go thru! Amanda is facing decisions no mom should have to face on her own! We are all hoping and praying that this sweet little girl gets put on the transplant list this week!!!
Next, my cousin Heidi is pregnant with twin girls. 26 weeks along and developed twin to twin tranfusion syndrome. One baby is taking all the nutrients from the other baby and if it continues the other baby will eventually die. She was scheduled to go to Ohio today to do the procedure, but she ended up going into labor yesterday morning. So she is in the hospital until she delivers. And boy do I know what that is like. No fun! The waiting game sucks! The unknown sucks! They took 4 liters of fluid off her stomach thru a amnio reduction and stopped the contractions!! Hoping she can keep those babies in much longer!!
My other cousin, Nicole, her boyfriend was involved in a head on crash Sunday night. He has 2 collapsed lungs and a head injury! Hes 21. Praying for a fast and easy recovery!
And finally, Brielle has had a temp as high as 102.9 since Saturday night. I took her to the Dr yesterday and she has inflammed tonsils. Strep came back negative. If she doesnt improve by Thursday or develops new symptoms back we go.
So yes, as the title of this blog says, we need a BREAK PLEASE in our family!!! Everything will turn out good because our family has such a great support team and we believe!! My family was such a HUGE part in my life when I was going thru my journey 15 months ago! Without their faith, love, compassion, support, and confindence, I dont know where we would be. Everyone was so great it was amazing. Prayers go along way! Our family will make it thru all of this!
Brielle was re-evaluated with Occupational, Physical, Speech, and early intervention last week. Basically they come in and set "goals" for her to reach over 6 months. They usually dont renew this early, but she reached all her previous goals before the 6 months :) Thats my girl! Early intervention actually will not see her anymore since she is doing so well! The other 3, I have requested to continue. I am SO afraid that I will miss something as time goes! Technically she is approved til she is 3, but we can decide to discontine earlied, increase or decrease how much they each come etc. She has proved everyone wrong since the gecko, but I still want the eyes to watch her. They also give me a lot of good tips and pointers and games to do with her that really get her going. I always say, "DOH mama! Why didnt I think of that!"
Tomorrow, if it doesnt rain! UGH! Brielle is in a childrens parade! We decorate her stroller and march downtown to a park where they have cake and activities for the kids to celebrate the 10th birthday of Childrens Hospital who played such a big part in our lives this past year!! I am pretty fricken excited!! I am dressing her up as my buttefly. Same as her birthday party, she was a little fragile caterpillar that emerged into a beautiful butterfly! I got a headband and made her little antennas, she has wings, I have flowers to go all over her stroller! Im pumped!! Please rain, GO AWAY!!
Break please for the Driessen Family (My maiden name). 1st, My cousin Amandas baby, Jenna, is 9 months old and ended up in the hospital mid June. Determined that she has a genetic heart condition and needs a heart transplant. She has endured more than any baby should ever have to go thru! Amanda is facing decisions no mom should have to face on her own! We are all hoping and praying that this sweet little girl gets put on the transplant list this week!!!
Next, my cousin Heidi is pregnant with twin girls. 26 weeks along and developed twin to twin tranfusion syndrome. One baby is taking all the nutrients from the other baby and if it continues the other baby will eventually die. She was scheduled to go to Ohio today to do the procedure, but she ended up going into labor yesterday morning. So she is in the hospital until she delivers. And boy do I know what that is like. No fun! The waiting game sucks! The unknown sucks! They took 4 liters of fluid off her stomach thru a amnio reduction and stopped the contractions!! Hoping she can keep those babies in much longer!!
My other cousin, Nicole, her boyfriend was involved in a head on crash Sunday night. He has 2 collapsed lungs and a head injury! Hes 21. Praying for a fast and easy recovery!
And finally, Brielle has had a temp as high as 102.9 since Saturday night. I took her to the Dr yesterday and she has inflammed tonsils. Strep came back negative. If she doesnt improve by Thursday or develops new symptoms back we go.
So yes, as the title of this blog says, we need a BREAK PLEASE in our family!!! Everything will turn out good because our family has such a great support team and we believe!! My family was such a HUGE part in my life when I was going thru my journey 15 months ago! Without their faith, love, compassion, support, and confindence, I dont know where we would be. Everyone was so great it was amazing. Prayers go along way! Our family will make it thru all of this!
Friday, July 15, 2011
CrAwLiNg!
Brielle is CRAWLING!! I got a call at work :( about 10am saying she crawled for the very first time!!! Boy o boy! Where has these last 13 months gone???? I feel like just yesterday she was hooked up to cords and wires and oxygen and monitors and I was trying so hard to vision life without all the "equipment." And now Im trying to figure out where that all went! Shes getting so big! Its wonderful considering her birth weight, but Im starting to miss my cuddly immobile baby!!
On another note, my neice, Johanna, that is 7 weeks ADJUSTED younger than Brielle started crawling today as well!! How cool is that??
On another note, my neice, Johanna, that is 7 weeks ADJUSTED younger than Brielle started crawling today as well!! How cool is that??
Tuesday, July 5, 2011
Just an Update
Brielle is trying O so hard to crawl!! I thought she wouldnt, but all of the sudden she got this urge to try it out. She goes from sitting to the crawling position but then shes not too sure. But she is getting it! She rocks on her hands and knees. So we will see. And the most exciting (for me anyways) She started to say....MA Not a full mama but its a step in the right direction Right???
She has just started the 3rd stage foods. She just had lasagna. She loved it!! She still gets full really fast and eats more meals a day. Shes still a peanut with a small belly but thats okay! To date she is 18 pounds. She is a happy, opinionated, joyful little girl. Her laughter and smile brings such joy to my face everyday! There isnt a day that goes by that I dont say to myself "This is truly my little miracle! 2 days past the "viable" gestational age that the Drs would save her." TWO DAYS! 2. And doing incredibly well!!!
We went to fireworks last night. Before we went, I was feeding Brielle supper and I happened to tell her that we were going to go see fireworks tonight that went "BOOM" real loud. She giggled so loudly it was hilarious! I got it on video! I wish I could share videos on here. Im going to figure it out :)
She has just started the 3rd stage foods. She just had lasagna. She loved it!! She still gets full really fast and eats more meals a day. Shes still a peanut with a small belly but thats okay! To date she is 18 pounds. She is a happy, opinionated, joyful little girl. Her laughter and smile brings such joy to my face everyday! There isnt a day that goes by that I dont say to myself "This is truly my little miracle! 2 days past the "viable" gestational age that the Drs would save her." TWO DAYS! 2. And doing incredibly well!!!
We went to fireworks last night. Before we went, I was feeding Brielle supper and I happened to tell her that we were going to go see fireworks tonight that went "BOOM" real loud. She giggled so loudly it was hilarious! I got it on video! I wish I could share videos on here. Im going to figure it out :)
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