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 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, November 16, 2010

Our perfect addition...

So I just wanted to give an update! Since Brooklynn's surgery, she has done fantastic! Her tethered cord surgery was a complete success, and minus some granulation tissue around the incision site which she is taking an antibiotic for (and we have had this previously on another incision site) the incision is healing very well! We took her to the neurosurgeon yesterday for her post-op and everything was great. We go back in 6 months for a follow up MRI. Her leg on the other hand, obviously we wont know anything for awhile. We don't go back to the orthopaedic surgeon until the middle of December. I guess then he will take the cast off and then I don't know what. He was only able to straighten her leg a little bit and after her surgery, he had mentioned taking her back into the OR a couple more times to straighten her leg out a little bit at a time and to keep recasting it. I hope this isnt the case. I dont know how long it will be before she'll be able to walk. Thanks to the tethered cord surgery, she is finally able to sit up! She can now sit un-assisted for 30-60 seconds at a time. And she'll go longer and longer every day we do this! It looks like that surgery relieved alot of her bowel issues as well and she is now having no issues producing a bowel movement...and I wont even know it until she fusses about it! Before, I would know because it was so hard for her to go! I have seen so many positive improvements from this surgery, I am just thrilled! And I know she is too! :) She is just doing so great. She's becoming very nosey too! She is starting to get bored with all her toys and is always looking for something new! If I put toys out in front of her, she will bend over backwards and look behind her for something else! She will tilt her head to look at things sideways too....which is so adorable! And when she wants to be held, she will whine until you come to her, and then she'll reach out for you to pick her up! Especially if your her daddy! Haha! She recognizes her name and will look at you when you call her. If she drops a toy on the ground that she still wants to play with, she will get upset until you pick it up and give it back to her. If I count to three slowly, she laughs in anticipation that Im going to tickle her. She pulls her socks off....and pulls her bows out of her hair....and then eats them..haha. She loves to look at herself in the mirror!!! She will look at herself for an hour if I let her! She'll reach for different things to play with, and likes to play with the phone, her feeding pump, and still loves her books and dolls. She loves anything that lights up or plays music, and loves it when I dance with her. She smiles and laughs. When she's tired, she'll let you know. She'll take a quick 5-10 minute cat nap and then she's good as new for a couple more hours. She still sleeps about 10-12 hours a night and rarely wakes up during that time. Some days are harder than others, but so much progress is made every single day, and I wouldnt change a single day that I have spent with her. She has been an amazing journey and has taught me more about life and how important the little things are, than I could ever dream of teaching her. She has the most beautiful spirit. I am enjoying all my time with her now, and look forward to what she'll bring to our family in the future. So much joy and excitement and so much to look forward to. She was our perfect addition.

1 comment:

  1. What wonderful results! I'm so glad the TSC surgery was a great success!