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.

Wednesday, July 7, 2010

A frustrating day...

I'm slightly frustrated today. Trying to get all our things in order, we've recently had A speech therapist and a physical therapist come to our home to score Brooklynn on certain tests that we're needing. First the speech therapist did her test last week. Brooklynn scored on a level of a 3-4 month old baby. With how small she is, and everything she's been through....I was thrilled!!! Obviously she cant speak, so she is tested more on cognitive developement, etc. - following sounds, responding to voices, putting things in her mouth, etc. She did great! Well, today the physical therapist came out. He used a standardized Peabody test. He tested her on things like head control (holding her head up, turning to look at you when you speak), playing with her toys, pushing herself up from her belly, rolling over, etc. She's testing on a level of a 1 month old baby. :-( I have to keep telling myself it's really better than that. She actually has great head control and he gave her that. She cannot yet push herself up, she can roll from her back to her side and back to her back, but she cant yet fully roll over. She'll look at you and find you when you talk to her, but if she's on her tummy, it's hard for her to turn her head completely so he didnt give her that either. With this test, unlike the one the ST used, it is standardized with standardized scores. So when he scored her, it's all or nothing. There is no in between. No points for being so close to doing some of these things. I just have to give myself peace of mind by knowing that she really IS so close to doing some of these things. Not only is she close, but does it matter? Does it matter if she does these things right this moment? As long as she tries, right? And she does. She tries very very hard. She has so much will and determination that I know in no time at all she'll be doing these things. She may not reach her milestones the same time other babies her age will, but she will. One day. In the end, she's a very happy baby. She smiles and laughs. And that's what's really important. She smiles and laughs.
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2 comments:

  1. BrandiJuly 7, 2010 at 10:33 PM

    Katie, yes...she smiles and laughs, that IS all that's really important right now. You have to remember that she has spent a fair amount of time in the hospital, on her back, recovering from surgery. Think if you were in her shoes, going through all of the surgeries, tests, and anesthesia that she has been through. I know that if it were me, I wouldn't be doing as well as she is right now.

    Nathan gained head control at 5 months, sat up independently at 9 months and rolled over from his stomach to his back at 13 months. He has had physical and occupational therapy since he was 3 months old. He started feeding therapy at 5 months and speech at 23 months. He has come sooooo far with the help of his therapists.

    It's o.k. that she isn't reaching milestones right now. They will come when she is ready. I hated hearing that statement when Nathan wasn't reaching his first milestones, but I am o.k with it now. I am so excited that he is walking with one hand support. He's two years and three months and even though he is over a year and a half behind the milestone, we celebrate it as if it were met when it was supposed to.

    Just keep loving and adoring her like you do. She is thriving because of your love and dedication to do the right thing for her. She will continue to progress because of your love!

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  2. CindyJuly 8, 2010 at 10:03 PM

    Tests. Scores. There have been many, and there will be many more to come, and they always show where Natalie is...which is NOT at age-appropriate level. I agree it's heartbreaking, because the tests don't see what our kids CAN do. But the tests bring the therapists, and the scores justify more therapy, and our kids make lots of progress and surprise everyone, including their parents. Hugs, Katie!

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