Brooklynn's Hope


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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.

Tuesday, July 13, 2010

A whole new view...

I am completely exhausted today, although Brooklynn's first day of physical therapy went great! It was more of an evaluation, but I learned a lot of neat new tricks to try with her to help strengthen her muscles. Brooklynn was a total groucho though. Her tummy wasnt feeling so good this morning so she cried a lot. When I say a lot, compared to a lot of other babies it's really not that much. It's just that Brooklynn only lets out an actual "cry" about once every 2 weeks. Usually she's a happy content baby. Im sure the people in the waiting room just LOVED us today. Haha. I know it's a lot harder to have to listen to a baby cry when that baby isn't yours. Anyways, they used the 2nd Peabody test to evaluate her and she tested on a 3 month old level for stationary and reflex (her alignment and moving her limbs and head, etc.). Unfortunately she only tested at a 1 month old level for locomotion. But hey, that's why we are there right? Today gave me a whole new grain of hope for us. I was seeing the things the therapist was doing with Brooklynn and thinking to myself that...wow, she should get this in no time! It all looked simple enough and Brooklynn was responding very well to her tactics. She was doing all the "right" things. It really was great and I just think that this was such a huge step for us. Therapy is one of the most important things for a child with RTS and I am so glad to have finally made it to this point. I know it might seem crazy to others that a 5 month old has already begun therapy, but we all take for granted how important it is and how much work it really is on our childrens part to be able to do these so called "simple" things. I know I did with my son. It all seemed to just come to him. With Brooklynn it takes alot more thinking and effort on her part. It's not as easy as we all think it is. We never really realize how important it is for them to be able to hold their head up, roll over, push up with their hands, sit up on their own....even just to be able to move their neck and head to look from one side to the other to be able to see who is talking to them. These little things are so important to our children and really set the ground for the bigger things in life. You have to master all the small steps before you can walk to the potty on your own, go on a family bike ride, play jump rope with the neighborhood kids, run on the playground with your best friend, be able to go swimming when you take a family vacation. All these big things are what we, as adults, just do. We dont think about it, we just do it. Could you imagine not being able to do these "simple" things? Could you imagine not being able to get up and go to the bathroom when you need to, or even just be able to look to see who it is that is talking to you. I couldn't. Thanks to Brooklynn, I don't so much take the small things for granted like I always have in the past. I am starting to appreciate the simple things I never did before. Thanks to Brooklynn, I can now view the world in a different light. She was given to me for a reason. I think this is one of many reasons. And she is one special little girl.
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1 comment:

  1. CindyJuly 13, 2010 at 7:41 PM

    Congrats on surviving Brooklynn's first therapy session. Natalie started early too, and we know she wouldn't be doing what she's doing without therapy. There will be a lot of improvement, but often it comes after a lot fo waiting...and then all the achievements come at once. Yeah for therapy!

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