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!
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.