Anxiety issues...

So I know this is probably very silly, but I would just like to hear everyone else's thoughts on this. Tim and I have not gone anywhere together childless since Brooklynn was born. We've gone on dates of course, but I have NEVER left her overnight. I have agreed to go to the mountains for a couple days in December, and I'm already having anxiety over it. I wake up in the middle of the night and just worry. I never liked leaving Devon either when he was little, but he was never on a feeding tube, heart and apnea monitor, had 7 surgeries, feeding/sensory/mobility issues - and the list goes on. Plus he's almost 10 and is very self dependent. Brooklynn is a little different. Well, she's A LOT different. My mom is coming here to stay with them and I know they will be fine, but how do I shake the anxiety of leaving? She's almost 2 and I seriously have never left her for a single night...with good reason. I actually have never left her longer than just a few hours at a time, and even that is not often. Other than Tim, nobody has ever even driven her in a car somewhere besides me. I know this has got to be crazy. But she eats every couple hours on bolus during the day and has to be switched to continuous at night, her monitor needs to be turned on at night, when going somewhere - her travel feeding bag needs to be hung in the car a certain way, if her tube gets pulled on - it hurts and could possibly come out - and if it does, that's a hospital trip, she gets miralax every morning and if its skipped - she'll most likely need an enema the next day (yes, it's that bad), if she touches certain things she's not used to or has a certain texture - she gags and will try to throw up, she doesn't have full range of motion in her left leg, so if it's positioned a certain way, it could be catastrophic., if you aren't extremely familiar with her personality and sleep pattern, you might think she was happy and playful when she's really running a 104 temp with a wbc of 60,000., oh my gosh the list goes on forever. Other than Tim and myself, there is nobody I trust more with my children than my mother. That is not the issue. The issue is my worrying and anxiety over leaving her! Even with Devon, my typical child, I had a hard time leaving him for a long time. I had to have gall bladder surgery when he was 2 weeks old, but I never voluntarily left him until after he was 1. I don't see how any parent voluntarily leaves their children for more than a night so early on, but I understand that every one is different and I respect to each their own. I just personally can't do it. They are still so little and so dependent. And just not old enough for anyone else to have spent enough time with them to know their quirks and what works and what doesn't. Now with Brooklynn, I know she's almost 2 and it's a little extreme, but with everything she's/we've been through - and still going through...hmmm. Maybe I'm being paranoid and need some anxiety meds. Maybe this is normal! Really, what is normal anyways? Everyone is so different - is normal even a word? I doubt I'm the only one like this. Maybe I am. Maybe not. When did you leave your children for the first time - and how often do you leave them? And I don't mean just to go to work, I mean take an overnight trip without them.

It's Incredible!

I don't even know where to begin! What an amazing day! GOD IS SO GOOD! I know you're probably thinking I'm nuts. My daughter just had her 7th surgery today totaling 5 times under anesthesia in the OR, and I'm writing celebrations. I have to admit, yes, I am a little crazy. I stress out so much in the week leading up to her surgeries and I become a little stand-offish and insane. I spend hours upon hours going through her medical records, previous doctors and surgery notes, and researching anything new that I have yet to learn on RTS, anesthesia, bone structure, etc. Basically anything and everything having to do with Brooklynn and surgery so that I am able to ask any questions I have beforehand and answer any and all questions they might have for me. And although her doctors have been more than fantastic doing their own research on RTS, I feel that since it is still so rare, they are not always going to be updated on the new findings that our RTS community becomes aware of. Therefore, it is my duty as Brooklynn's mother to make sure they have everything they need to be prepared for what may happen while in their care. I mean, if your typical child has recently been injured or ill, you as a parent would notify their day care or school of this matter wouldn't you? Well, this is no different. It's my job. And by all means, I am more than happy to do this for her...for them...for me. So in essence, the week leading up to surgery is an emotional one for me. Then comes the night before. The week of surgery, I try to keep Brooklynn at home as much as possible. I do this so she doesn't pick anything up and get sick. Surgery would have to be cancelled and rescheduled which would mean another week of me being crazy. Ha. The day before surgery, I really don't go anywhere and we stay home all day. I try to get her to rest and relax as much as possible and the night before I let her spend extra time in the bath (she loves her baths), feed her, and get her to bed at a decent time so that she is energized and strong for surgery the next morning. Last night was great. My wonderful mother came over and made us dinner. One less thing for me to worry about. :-) So of course I am up most of the night before surgery. Not just because I worry so much, but also because I have to switch her continuous drip of formula over to clear pedialyte at midnight, and then turn everything off at 4:30am. I woke her up about 5:50 this morning, we left the house about 6, and got to the hospital about 6:40. Brooklynn's watched Mickey Mouse Clubhouse the whole way there and was in a great mood. They took us back to the room to prep her about 7am. Someone comes in to take vitals, then the surgeon's residents come in and ask questions, initial the surgical areas on Brooklynn with a marker, etc. Then the surgeon comes in. He looked her over once more and at the last minute, we decided to just do the one finger. Her thumb cannot be fixed, but it is fully functional and she is not at all bothered by it. (It's perfectly straight, it just doesn't bend at the middle joint.) Then he leaves and the nurse anesthetic comes in. We talk and address concerns and what their plan is for her. Everyone adores her (OF COURSE!) because she is laughing and smiling and having fun with them so early in the morning! One nurse even brought her an adorable white teddy bear for her to keep. We brought her puppy with us, but she really loved the bear too! They both went back to the OR with her, along with her favorite blankie. Okay, so this is the last time I cried. I always cry when they take her from me. Even though she's smiling while they wheel her away. It's just, she doesn't usually go places with people. She's never had a babysitter before. Just my mom, my dad and my mother in law. And never longer than just a couple hours. In my mind, I know she'll be fine. They take such great care of her at Egleston. They all know her so well and are very aware of what might happen and what precautions to take. But there are always risks. Especially with her airway. And so I cry. As soon as she goes back is the time to do anything we need to do, so Tim and I walk down and grab a coffee and a croissant. Thank goodness for Starbucks at the hospital! Once we walked back up to her room in the surgery center (we don't have to wait in the waiting room...I think they love us now), we watched TV and waited about 20 minutes before they called us to tell us she was asleep and doing great. About 30 minutes later, her surgeon comes in, tells us it was a success and she did great. About 45 more minutes go by and the phone rings again. The nurse tells us how absolutely beautiful she is, that she hasn't woken up yet, and that she's going to bring her to us in just a few minutes. Then about 15 more minutes go by, and in rolls her bed with a sleepy but awake Brooklynn. She looks at Tim and I with her sweet but sad face, then closes her eyes and goes back to sleep. Another hour goes by while I just lay next to my sleeping beauty waiting on her to awake. They come and check her vital signs once more and we hook her back up to her pump with some pedialyte to make sure she can tolerate it. She finally wakes again. This time she has a grin from ear to ear! She is so happy and talkative and ready to go home! She doesn't even look like she's just had surgery! SHE'S AMAZINGGGGGGG!!!! I'm telling you, just when you think you love your children more than you can ever imagine, sometimes they'll do something and all the sudden your heart finds a way to love even harder. What an overwhelming feeling! And I can't believe they let us go home! We've had stays ranging from 3 days to 18 days. NEVER have we gone home the same day! She just did so fantastic! So in all, this is a day to celebrate for many reasons! 1. We got our favorite post-recovery nurse who we love and loves Brooklynn. 2. During the few short hours we were there, she was visited by 3 of her surgeons! They were obviously in the OR and saw her name on the board and wanted to come see her. We just feel so much love at that hospital. It is truly an amazing place. 3. Her quality of life and use of hand was just made better by another amazing surgeon. 4. She made it through her 7th surgery with ease and grace and a smile on her face! 5. We're all back home again! She is now asleep in her swing, surely gaining energy to become the vivacious little munchkin she always is. We're just waiting for her to wake up so we can be blessed once again by her beautiful smile! God is so Good! What an amazing dayyy!

Hello again...it's been awhile.

So hello again! I know, I know...I am horrible about updating this blog. My mid-new years resolution, to keep this site updated a little more frequently. So here's a little about what's been going on. I will try to make this as short as possible, but than again...it has been awhile.
Brooklynn has been doing so fantastic! - for the most part. Yes, she is still predominantly tube fed, but her feeding has improved so much! She was approved during her last swallow study the beginning of January for trial portions (about an ounce in the morning and an ounce at night) of stage 2 baby food. She has been doing so well, we have slowly "up'ed" the amount of baby food she is getting - with the knowledge that if we hear any congestion, pnemonia, etc...we stop spoon feeding until she is completely cleared up and then we can begin again slowly. She has gotten a slight cold once or twice in which we discontinued her spoon feedings for 2 or 3 days, but she has never (knock on wood) had pnemonia, etc. She is currently eating 3.5 ounces in the morning, 3.5-5 ounces in the evenings, and occasionally 3.5 ounces during lunchtime. She is doing so great! Her lip closure is good, her swallowing is slow but good, and she is beginning to learn the munching pattern and how to rotary chew. We attempted stage 3 baby foods, but got the typical gagging reflex (that even many typical babies give during stage 3...well...it's gross!) Tomorrow we are going to attempt mashed peas and carrots (real people food!) and creamy mashed potatoes to see how she does. I am so excited! We will be doing this during feeding therapy. We have been slowly introducing dissolveable gerber puffs and yogurt melts. It started rough, but she improves more and more each time! All in all, her feeding is going so well. I definitely see a future with no feeding tube. (Although, I don't think it would be such a horrible thing to keep it in solely for medication purposes for those times when she gets sick. Or for when she's sick and just doesn't feel up to eating, it's great to run pedialyte through to keep her hydrated!) Anyways, feeding = great!
So she's still not what you would consider "mobile" yet. Do I think she's mobile? Oh yeah. She is so much busier than I ever remember Devon being! She always, always, always has to be doing something. She just doesn't sit still. But I will tell you, for this, I am extremely grateful! I love that she wants to see everything, and touch everything, and throw things and make a mess! This is how she learns. These are all "typical" baby movements that most parents try to discourage. You never realize that this is all a part of their learning process and development until you have a child where the learning process is just a little more in depth than that of a "typical" child. So do I encourage banging a spoon on pots and pans? Do I encourage opening and closing (slamming!) the doors on the entertainment system? Do I encourage throwing things in certain directions and making messes? Do I encourage putting everything (that is safe) in her mouth? YES...to all of this! I DO! Exploring is all a part of her learning process. Opening, closing, catching, throwing, banging, textures, etc. This is how she learns. And it's amazing how much I've learned. I remember constantly pulling objects out of Devon's mouth when he was little and trying to discourage him to open and slam doors and banging on things and putting things in his mouth. If only I knew then what I know now. So anyways, Brooklynn continues to go to Physical Therapy at the hospital 2 days a week. Although she can sit up unassisted, she cannot get into the sit up position on her own from lying down. She is learning to sit up on her own, she is learning to reach across her body without losing her balance, she is learning to get into the crawling position, and lastly, she is learning to walk! Her upper body strength is incredible. Although weak through her lower body, her lower body strength has improved so much since she has began (at 3 months old.) Physical therapy is moving slow, but the amount of frustration she shows and not being able to get to where she wants, I know it will all come soon. They are using the treadmill to teach her to walk. She is put into a harness and on a slow speed to force her to put one foot in front of the other. She learns very quickly! She does well at holding herself in the crawling position, and she has stood on her own (did not pull herself up - but was put in that position) holding on to a table with both KAFO's on for about 12 seconds. It was so awesome! At every small acheievement, we clap and cheer her on. I hope one day to see her clap for herself as well as some babies do. We're working on it!
We're also working on blowing kisses! She loves it and laughs when someone blows her a kiss, and we attempt to help her blow kisses, but she hasn't quite gotten the hang of it herself yet. It too, will come. In time. What she DOES do...is actually give kisses! This is new! And I am beyonddddddd thrilled! One of my favorite things. All I have to do is simply ask "Brooklynn, can mommy have a kiss?" And I get one! A big, slobbery, open mouthed kiss. Of course, I ask over and over. And she loves to give them! She is so sweet.
So, Brooklynn in a nutshell....she loves to give kisses, loves Barney but even more so - she has a new profound love for Mickey Mouse Clubhouse and shows enourmous excitement at the site of Mickey on TV, we can't pick a favorite food as she seems to love them all so much and get's so excited to be spoon fed. She currently says "mama" and "uh-uh" - (as in "no") when we ask her a question. She can roll a ball back and forth, but when holding an object - she tends to toss everything behind her. She absolutely LOVES to go swimming in the swimming pool and gets excited at the sight of me pulling her bathing suit out. She also LOVES to go on golf cart rides and walks in her stroller - especially bumpy rides. She laughs anytime we hit a big bump in her stroller. She still loves to pull hair and thinks its funny to bite. (I am currently trying to break her of those two habits.) She loves it when I sing to her. She loves when I sing her Barney "I Love You" or "Mr. Knickerbocker," and she loves songs about rainbows - "Somewhere Over the Rainbow" and her very favorite, "Rainbow Connection." She sleeps great at night and I think I've finally figured out the right amount of Miralax to get her to produce regular bowel movements. YAYYYYY! In the last few weeks, I have only had to administer 2 enemas. I LOVE not having to give her an enema. It is about an hour and a half process getting it all made and ready, administering it, and waiting. So glad to be most of the way through with that!
So I guess this wasn't so short after all. I just have a quick story to share if you can bear it....
So I knew this would be inevitable, and in time, I would run into this. I actually figured it would have happened sooner than it did, but we have been so lucky and blessed, that it actually took almost 17 months to happen. Devon, Brooklynn and I were out shopping at The Avenue here in Peachtree City this past Saturday. I had Brooklynn in her stroller as I usually do. During the colder months, she was usually covered with a blanket, so her differences were not as noticeable. It's summertime, and too hot for a blanket. So of course, like a normal baby, she was simply just strapped into her stroller, paci and puppy in hand. And we were shopping like anyone else would. Of course it was Saturday, so all the stores were pretty busy. We were strolling through American Eagle and had made our way to the back of the store where there is a sitting area with a couple chairs and a table. There was a woman sitting in one chair with a clear visible view of Brooklynn. Her husband was sitting in the other chair - he didn't have the same view as we were kind of positioned behind one of the clothes racks. The woman was looking at Brooklynn (nothing new, everyone does.) Let me start with, I am very used to the stares and questions as it's not every day that people see a 17 month old baby with a full heavy pink brace on her leg and a feeding tube attached to her leading to a bag attached to the stroller. I completely understand that for some, it is an uncomfortable situation and they are at a loss for words. But until that day, it seems that everyone I've encountered have either looked for a quick second and quietly looked away, or they will simply ask questions. Like "What happened to her leg?" or "What is that tube for?" or even "Is she okay?" I am more than happy to tell you why she has a brace and a feeding tube and explain RTS to people. Awareness, right? I have literally spent long periods of time, even more than an hour, talking with perfectly good strangers about Brooklynn's situation. Most people have handled the situation with grace and understanding. After being educated, they usually follow their questions and end our visit with a pleasant comment for example, "but she's so cute!" or "you would never know anything is wrong without her brace and tube attached to her." Or even just a "wow, she's been through a lot!" I've usually had a fairly good experience with strangers and educating them about RTS. Well, not Saturday. The woman in the chair was staring, leaned over to her husband loudly whispering, he goes out of his way to lean far away from his chair and around the clothes rack to stare at Brooklynn himself. After a "LONG" stare, he follows it with looking me straight in the eye with looks of complete and utter "disgust." For the first time, I felt the sting of it. I knew he was thinking "she did that to that baby." I so wanted to say "no, I did not swing her by her legs and break one," "I did not push her down," "no, I do not, and did not take drugs or alcohol while I was pregnant with her." A million things were running through my mind at once during these few short moments of hurt. But let me be clear...it was a VERY few short moments of hurt. All about 10-20 seconds was I hurt by this man and his wife and their loud whispering and glares of disgust. After those few seconds, my hurt and anger turned to sorry. I felt very sorry for this man and his wife who were also shopping with their 2 young (elementary/middle school aged children.) I felt sorry for their ignorance. Sorry for their lack of understanding and compassion. Sorry that because of them, there is a good chance that their children will turn out just like them - as they were there by their side. Sorry that my son Devon had to witness this hideous act of human incompetancy toward his sister whom he adores and will stand up for. And sorry that I know we will come face to face with this man again because we recognized him as a father who's son plays basketball in the same league as Devon. Sorry that he is who he is. Most of all, I am sorry that he will never have the opportunity to know and love someone in his life as beautiful and wonderful as Brooklynn. I know I will come across this from time to time, and it's not okay. But I will do my best to ignore and move on. And like any parent would do, I will do my best to make these awful encounters into a good learning experience for myself, Devon, and the rest of my friends and family.

Sweet Dreams.

Year 1...

I have copied and pasted an email I had sent via the RTS List Serve - to all my RTS family. I know a few of you have opted out of the list serve (to keep your sanity) so I thought I would share on here as well. Also, to thank my family and friends who have been so supportive of us this past year. Thank you all. XOXO

I found myself thinking a lot today and wanted to drop you all a note. I have spent this day reflecting on this past year, and how my world has been completely thrown for a loop. How the lives of my family has been completely changed. I never thought this would be me. I know none of us ever thought we would be in the position that God has put us in. The parent of a differently-abled child. Before Brooklynn was born, I had all intentions on returning to my full time job as the manager of a retail store (Justice - formally Limited Too for those who have girls and know this store). :-) We had her on the waiting list to get into a local daycare (the same one my son went too...yep..there's a waiting list!). We had our lives all planned out. But when Brooklynn came, everything changed. Needless to say, I no longer work due to our hectic schedules and she stays home with me. I was induced a week and a half before my due date because her weight had dropped to the 7th percentile and we werent sure what was wrong. I kind of had an inkling there may be a problem. Then she came, and she stopped breathing. The respiratory team rushed in and she was taken to the NICU and put under an oxygen tent. As soon as I could, I went to visit her in the NICU. I thought a day or two and she'd be home. Then on the 2nd day, they had scheduled her for ultrasounds, a swallow study, and the cardiologist came in to see her. As my husband and I sat there next to her bed, the Neonatologist came to talk to us. In the middle of the conversation, very non-chalant, he mentioned she might have Rubinstein-Taybi
Syndrome. Before the conversation was even finished, my husband had found the RTS website on his blackberry and had shown me the pictures of the children. After reading a little about this and seeing the photos, we KNEW she had RTS. Brooklynn spent 17 days in the NICU before she was sent home - and referred to quite a few doctors post discharge. During those 17 days, there were only about 2-4 hours a day that either my husband or I was not by her bedside. I left a CD player next to her bed with Jewels lullaby's playing 24 hours a day. I cried and cried and cried those 2 weeks. Not because she had RTS, but because I had to continuosly leave the hospital - without my baby. She came home the day after Valentines Day. (The day before Vday, my dog that I have had since I was 13 passed away - a nightmare of a 2 weeks.) Of course - we celebrated Valentines Day with her. We brought her balloons and a bear and dressed her in a Valentines Day outfit. I even decorated her bassinet in the NICU with sticky hearts and the nurses had made her bows. 2 weeks after we were home, we had already been to see her GI doctor, and we were at the childrens hospital having another swallow study and UGI. During the UGI, they discovered malrotation and she was immediately admitted and had surgery just a few short hours later. Needless to say, I was a mess! And thus began our many hospital stays throughout the year. During that surgery, she had a LADD procedure to correct the malrotation, an appendectomy, and her Gtube placed. She was inpatient for 18 days. She was home for 4 weeks before having another emergency admission for choking (aspiration) and had another surgery - a nissen fundo. She again was inpatient for 18 days. She's had a couple more surgeries (left knee reconstruction, laminectomy for a tethered spinal cord, an a steriod injection in her Gtube site for granulation tissue). In between stays, we have had many many many ER visits. She currently see's 11 doctors and 3 therapists. We usually have 1-3 doctors visits a week and she currently goes to PT 2x a week and feeding therapy once a week. And I cannot tell you the amount of progress we have seen! She has finally passed a swallow study for trial portions of honey consistency/pureed foods. And she has been ok'd by her orthopaedic surgeon to begin gait training in therapy as she is finally able to bear weight on her left leg after surgery. She is almost standing on her own and they hope she'll be walking by 18 months. Now having said all of this, my reason for writing this is because after everything we've been through this year, I wouldn't change a thing! Of course I wished she didn't have to deal with the things she has to deal with. I wish I could make all this easier for her and my family - especially my son who has taken this so well and adores his sister, but has had to be without "mom" during Brooklynns hospital stays. I wished she didnt have to suffer the pain that she sometimes endures. But she is perfect. Absolutely perfect. There is not a day that goes by that she doesnt put a smile on my face, or make me laugh because of the silly things she does. She has been the most amazing gift and the perfect addition to our little family. My son adores her. And she is the biggest daddy's girl! Every time I am out with her, I am stopped. She put's a smile on the faces of everyone she meets. She not only brightens up our home, but she makes the world a brighter place to live. Now to all of you....I recently watched the RTS video that just came out to purchase. One thing stood out to me. One of the mothers stated that "if her child had to have a syndrome, she was glad it was RTS." SO AM I!!! If Brooklynn has to have a syndrome, I am grateful she has RTS. You all have been the greatest support for me this first year! I feel like God has blessed me with a second family. Until Brooklynn came, I never realized how many truly amazing people there were in this world. Thank you all for everything. There are 2 other RTS families besides mine that live here (within 5 minutes of me) who have been a great support as well. And there are I believe 6 families that are within an hour of me. I havent met them all yet, but hope to soon. We were unable to attend this past conference due to Brooklynn's surgeries, but I hope to meet all of you one day. What a journey this has been. Brooklynn has taught me more about life than I could ever teach her. They say as parents we try to teach our children all about life, but our children teach us what life is all about. Thank you all again for all the support and encouragement this year. I am sorry this is so long, but I have alot to write, as I have a lot to be grateful for this year. We've made it through year 1!!! A happy 1st birthday to my sweet sweet girl tomorrow! (And then a happy 9th birthday to my son on
Saturday!)