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, February 1, 2011

Year 1...

I have copied and pasted an email I had sent via the RTS List Serve - to all my RTS family. I know a few of you have opted out of the list serve (to keep your sanity) so I thought I would share on here as well. Also, to thank my family and friends who have been so supportive of us this past year. Thank you all. XOXO

I found myself thinking a lot today and wanted to drop you all a note. I have spent this day reflecting on this past year, and how my world has been completely thrown for a loop. How the lives of my family has been completely changed. I never thought this would be me. I know none of us ever thought we would be in the position that God has put us in. The parent of a differently-abled child. Before Brooklynn was born, I had all intentions on returning to my full time job as the manager of a retail store (Justice - formally Limited Too for those who have girls and know this store). :-) We had her on the waiting list to get into a local daycare (the same one my son went too...yep..there's a waiting list!). We had our lives all planned out. But when Brooklynn came, everything changed. Needless to say, I no longer work due to our hectic schedules and she stays home with me. I was induced a week and a half before my due date because her weight had dropped to the 7th percentile and we werent sure what was wrong. I kind of had an inkling there may be a problem. Then she came, and she stopped breathing. The respiratory team rushed in and she was taken to the NICU and put under an oxygen tent. As soon as I could, I went to visit her in the NICU. I thought a day or two and she'd be home. Then on the 2nd day, they had scheduled her for ultrasounds, a swallow study, and the cardiologist came in to see her. As my husband and I sat there next to her bed, the Neonatologist came to talk to us. In the middle of the conversation, very non-chalant, he mentioned she might have Rubinstein-Taybi
. Before the conversation was even finished, my husband had found the RTS website on his blackberry and had shown me the pictures of the children. After reading a little about this and seeing the photos, we KNEW she had RTS. Brooklynn spent 17 days in the NICU before she was sent home - and referred to quite a few doctors post discharge. During those 17 days, there were only about 2-4 hours a day that either my husband or I was not by her bedside. I left a CD player next to her bed with Jewels lullaby's playing 24 hours a day. I cried and cried and cried those 2 weeks. Not because she had RTS, but because I had to continuosly leave the hospital - without my baby. She came home the day after Valentines Day. (The day before Vday, my dog that I have had since I was 13 passed away - a nightmare of a 2 weeks.) Of course - we celebrated Valentines Day with her. We brought her balloons and a bear and dressed her in a Valentines Day outfit. I even decorated her bassinet in the NICU with sticky hearts and the nurses had made her bows. 2 weeks after we were home, we had already been to see her GI doctor, and we were at the childrens hospital having another swallow study and UGI. During the UGI, they discovered malrotation and she was immediately admitted and had surgery just a few short hours later. Needless to say, I was a mess! And thus began our many hospital stays throughout the year. During that surgery, she had a LADD procedure to correct the malrotation, an appendectomy, and her Gtube placed. She was inpatient for 18 days. She was home for 4 weeks before having another emergency admission for choking (aspiration) and had another surgery - a nissen fundo. She again was inpatient for 18 days. She's had a couple more surgeries (left knee reconstruction, laminectomy for a tethered spinal cord, an a steriod injection in her Gtube site for granulation tissue). In between stays, we have had many many many ER visits. She currently see's 11 doctors and 3 therapists. We usually have 1-3 doctors visits a week and she currently goes to PT 2x a week and feeding therapy once a week. And I cannot tell you the amount of progress we have seen! She has finally passed a swallow study for trial portions of honey consistency/pureed foods. And she has been ok'd by her orthopaedic surgeon to begin gait training in therapy as she is finally able to bear weight on her left leg after surgery. She is almost standing on her own and they hope she'll be walking by 18 months. Now having said all of this, my reason for writing this is because after everything we've been through this year, I wouldn't change a thing! Of course I wished she didn't have to deal with the things she has to deal with. I wish I could make all this easier for her and my family - especially my son who has taken this so well and adores his sister, but has had to be without "mom" during Brooklynns hospital stays. I wished she didnt have to suffer the pain that she sometimes endures. But she is perfect. Absolutely perfect. There is not a day that goes by that she doesnt put a smile on my face, or make me laugh because of the silly things she does. She has been the most amazing gift and the perfect addition to our little family. My son adores her. And she is the biggest daddy's girl! Every time I am out with her, I am stopped. She put's a smile on the faces of everyone she meets. She not only brightens up our home, but she makes the world a brighter place to live. Now to all of you....I recently watched the RTS video that just came out to purchase. One thing stood out to me. One of the mothers stated that "if her child had to have a syndrome, she was glad it was RTS." SO AM I!!! If Brooklynn has to have a syndrome, I am grateful she has RTS. You all have been the greatest support for me this first year! I feel like God has blessed me with a second family. Until Brooklynn came, I never realized how many truly amazing people there were in this world. Thank you all for everything. There are 2 other RTS families besides mine that live here (within 5 minutes of me) who have been a great support as well. And there are I believe 6 families that are within an hour of me. I havent met them all yet, but hope to soon. We were unable to attend this past conference due to Brooklynn's surgeries, but I hope to meet all of you one day. What a journey this has been. Brooklynn has taught me more about life than I could ever teach her. They say as parents we try to teach our children all about life, but our children teach us what life is all about. Thank you all again for all the support and encouragement this year. I am sorry this is so long, but I have alot to write, as I have a lot to be grateful for this year. We've made it through year 1!!! A happy 1st birthday to my sweet sweet girl tomorrow! (And then a happy 9th birthday to my son on