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.
Friday, October 14, 2011
So I know this is probably very silly, but I would just like to hear everyone else's thoughts on this. Tim and I have not gone anywhere together childless since Brooklynn was born. We've gone on dates of course, but I have NEVER left her overnight. I have agreed to go to the mountains for a couple days in December, and I'm already having anxiety over it. I wake up in the middle of the night and just worry. I never liked leaving Devon either when he was little, but he was never on a feeding tube, heart and apnea monitor, had 7 surgeries, feeding/sensory/mobility issues - and the list goes on. Plus he's almost 10 and is very self dependent. Brooklynn is a little different. Well, she's A LOT different. My mom is coming here to stay with them and I know they will be fine, but how do I shake the anxiety of leaving? She's almost 2 and I seriously have never left her for a single night...with good reason. I actually have never left her longer than just a few hours at a time, and even that is not often. Other than Tim, nobody has ever even driven her in a car somewhere besides me. I know this has got to be crazy. But she eats every couple hours on bolus during the day and has to be switched to continuous at night, her monitor needs to be turned on at night, when going somewhere - her travel feeding bag needs to be hung in the car a certain way, if her tube gets pulled on - it hurts and could possibly come out - and if it does, that's a hospital trip, she gets miralax every morning and if its skipped - she'll most likely need an enema the next day (yes, it's that bad), if she touches certain things she's not used to or has a certain texture - she gags and will try to throw up, she doesn't have full range of motion in her left leg, so if it's positioned a certain way, it could be catastrophic., if you aren't extremely familiar with her personality and sleep pattern, you might think she was happy and playful when she's really running a 104 temp with a wbc of 60,000., oh my gosh the list goes on forever. Other than Tim and myself, there is nobody I trust more with my children than my mother. That is not the issue. The issue is my worrying and anxiety over leaving her! Even with Devon, my typical child, I had a hard time leaving him for a long time. I had to have gall bladder surgery when he was 2 weeks old, but I never voluntarily left him until after he was 1. I don't see how any parent voluntarily leaves their children for more than a night so early on, but I understand that every one is different and I respect to each their own. I just personally can't do it. They are still so little and so dependent. And just not old enough for anyone else to have spent enough time with them to know their quirks and what works and what doesn't. Now with Brooklynn, I know she's almost 2 and it's a little extreme, but with everything she's/we've been through - and still going through...hmmm. Maybe I'm being paranoid and need some anxiety meds. Maybe this is normal! Really, what is normal anyways? Everyone is so different - is normal even a word? I doubt I'm the only one like this. Maybe I am. Maybe not. When did you leave your children for the first time - and how often do you leave them? And I don't mean just to go to work, I mean take an overnight trip without them.