Brooklynn's Neonatal Woe's
- Born at 5 lbs 8 oz. she was less than 4%tile in weight
- At birth she went into respiratory distress and was immediately taken to the Neonatal ICU and put under an oxygen tent for approx. 18 hours
- At day 2 of life she had shown difficulty feeding due to uncoordinated suck and swallow and required a combination of NG tube and oral feeds.
- She had hypoglycemia and jaundice which was mild enough to not require any treatment.
- Day 2 of life she had an Echocardiogram performed on her heart. It demonstrated a small PDA and a PFO with mild pulmonary stenosis and a bi-directional shunt. There was a domed pulmonic valve and an increased right ventricular pressure. She had a single episode of bradycardia.
- A swallow study was performed during her NICU stay which showed aspiration into her lungs and began feeding with the help of a Speech Pathologist 2 times a day with the rest of her feeds through an NG tube.
- She was discharged from the hospital at 18 days old on a heart and apnea monitor with an NG tube for her feeds.
Brooklynn's Medical Woe's
- After seeing an Emory Orthopaedist and an Emory GI Specialist, we were sent to Egleston Childrens Hospital for a few outpatient labs; an ultrasound on her hip to make sure it was in place due to her contracture in her left leg, an Upper GI to show possible GERD (reflux), and a swallow study to see if she was still aspirating. The ultrasound on her hip demonstrated that her hip was in place and all was well. The upper GI had shown that she did infact have reflux disease and also had shown unexpected Malrotation in her small intestines. We never made it to the swallow study as she was admitted through the ER for immediate emergency surgery to correct her Malrotation.
- On March 2, 2010, Brooklynn was admitted to Egleston Childrens Hospital and taken to the operating room for open surgery. She underwent a LADD procedure This included a duodenostomy repair of duodenal atresia and annular pancreas, placement of gastrostomy tube (G-tube) and an appendectomy. During her stay, she was seen by an Emory genetics doctor and was clinically diagnosed with Rubinstein-Taybi Syndrome at 6 weeks old. She was discharged 15 days later on March 17, 2010.
- Home for 40 days, Brooklynn had many choking spells due to Aspiration. Scheduled for surgery sometime late June or early July, Brooklynn had a choking spell in which she turned blue on April 22, 2010 and was immediately re-admitted to Egleston Childrens Hospital once again.
- April 26, 2010 Brooklynn was taken to the operating room for a Nissen Fundoplication to prevent reflux and hopefully cure her aspiration issues. This thankfully was completed laproscopically. Brooklynn was discharged 2.5 weeks later.
- During her inpatient stay at Egleston, A spinal ultrasound with a follow up MRI was completed per our request which showed an abnormally low lying spinal cord. A inpatient consult was completed with the Neurosurgeon and was decided, although aruguable, due to her syndrome, tethered spinal cord surgery would be later performed to increase her chances of normal development.
- After her discharge, Brooklynn was taken to Chattanooga, TN to meet RTS specialist and genetics doctor, Dr. Cathy Stevens. During her assessment, part of Dr. Stevens finding showed either a dislocated or missing left knee cap. An appointment was made immediately after to meet with the Emory Orthopedist once again.
- After meeting with the Orthopedist, an Ultrasound was completed at Egleston on her left knee. We've just received the results. Her left knee cap is smaller than the right one and dislocated. This will require knee reconstruction surgery scheduled on September 22, 2010.
- Surgery was completed on November 3, 2010 at Egleston Childrens Hospital on her tethered cord and her dislocated left patella. The neurosurgeon completed the laminectomy to release her tethered cord first. Everything went smooth. The orthopaedic surgeon went next to repair her dislocated left patella. After going in, he realized her left leg was a little more difficult than expected and her incision was rather large. Post surgery she was in a full leg cast for 6 weeks and now continues to be in a KAFO for approx. 20 hours per day. He completed the surgery, but there is no guaruntee that her patella will remain in place due to her low muscle tone and a higher probability to dislocate again. So far everything has been fine and she is healing well, although slow. She continues physical therapy 2 days per week to learn how to use her legs and walk. Her therapist is also using E-Stim therapy on her left knee to help wake up those muscles that have been sleeping since surgery and get her leg moving again. Lastly, her general surgeon went in the OR to repair the granulation tissue surrounding her feeding tube site. After repeated efforts of trying to rid the granulation tissue, this time...it WORKED! Yay! No more mess! All in all, her day spent in the OR was a huge success. I loved that all 3 surgeons were able to work together to keep her from having to repeat going under anesthesia more than she has to. All together she spent about 7 hours in the operating room that day and spent a total of 3 days inpatient..which was a shock! She had not left the hospital in less than 17 days prior to this surgery so we were ecstatic to be able to come home so soon.
Monday, June 20, 2011
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.