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.

Thursday, August 19, 2010

Oh my frustration, is in escalation!

I cannot even begin to express my frustration at this point! We are getting absolutely no where with this calorie, bile, pooping thing! I understand that children with RTS have extremely slow growth, but as Brooklynn being almost 7 months old, and still only 10 lbs. 10 oz., even on the RTS growth chart, she is still less than 10%. This little girl is super tiny! 2 1/2 weeks ago, her GI doctor finally (after 3 months of trying to obtain this) gave us the recipe to concentrate her formula from 20 calorie to 24 calorie to hopefully speed up the weight gain. Well, we tried it. And well, she couldn't tolerate it. She attempted to vomit (with no luck, due to her last surgery...the Nissen Fundo.) When she tried to throw up, I immediately stopped her feeds and vented her tube, only to receive nothing in return but bile. She had not pooped at this point in 3 days. So I called the surgeon, and immediately took her to the ER at Egleston Childrens Hospital. Almost the moment we arrived, they took her right back for Xrays and an Upper GI. Everything looked great! There was not another blockage (which was our concern,) and her intestines were not malrotated again. Picture perfect for what it can be. Obviously internally she does not look like your average baby due to quite a few different surgeries, but picture perfect in the world of Brooklynn anyways. So after speaking with the surgeon, we put her back on her normal 20cal formula until we could talk with her GI on Monday. Monday comes, her GI swears the 24cal had nothing to do with what happened. (I swear it did.) So again, we attempt the 24cal. Again, she tries to vomit. Again, I vent her tube with bile return. Again, I put her back on 20cal. Again, I call her doctor. Again, I attempt 24cal. Again, she tries to vomit. Get the picture? So last Wednesday, her surgeon (yes surgeon, not GI, because of her surgeries, her GI always wants us to talk with the surgeon..not her,) called in a couple prescriptions for her. So back on Reglan and Prevacid she goes. But of course, not until a week later, because her insurance likes to deny everything and it took us a week for us to be able to actually retrieve the prescription from the pharmacy. Ugh! Insurance. Our last insurance company never questioned a thing with her! This one denies everything! We had to change because I resigned to stay home and take care of Brooklynn. Insurance was through my job. Anyways, so back on Reglan and Prevacid. Hoping this helps to reduce the acid and help to empty her tummy quicker. Maybe after being back on this combination, she'll be able to tolerate 24cal again. Sooo, we were at the GI doctor on Tuesday this week. I told her that I was somewhat concerned that Brooklynn had not pooped since last Thursday. I always feel her tummy, and it's always soft, but I cannot get her to poop! Her GI felt her tummy, which was soft, and attempted to help her poop, but didn't feel anything. She get's Miralax daily and on Monday I gave her a suppository as well. Did she poop? NOPE! So here we are, Thursday, still no poop. It's been a full week now. Her surgeon has numerous times expressed his concern for her to poop daily because of her previous malrotation. She just wont go! And I'm very worried for her! Back to the Reglan and Prevacid. So she's gotten 2 doses in so far. And we attempted the 24cal again yesterday. But this time...I calculated her daily calorie intake, and decreased her volume. Instead of 31mL/hr. for 20hrs/day, she is getting 29mL/hr. for 20hrs/day. She is still getting many more calories than she was with the 20cal, but not as much volume. I kind of just halfed it to start from what she was originally getting, to what she would be getting had I stuck with the same volume, but increased to 24cal. Confused? Unless you've gone through this, I wouldn't be surprised if you weren't. So this morning we wake, or let me say, Brooklynn wakes me up with her moaning and groaning, yet still sleeping self. I vent her tube and get tons and tons and tons of air! We always get a lot, but with this new recipe, we seem to get much more. And the formula that came out with the air, well...oh wait, no formula...BILE! Tons and tons of BILE! She has not attempted to vomit, thank God, but somewhere and I don't know why, her body just does not respond well to this change! So once again, I have left a message for her GI doctor to call me back. And once again, this better get figured out...yesterday!

Wednesday, August 4, 2010

It payed off to be a bitch...

Soooo we have returned from the GI doctor. This was the first time since Brooklynn was about 5 weeks old that I have attempted the drive to the Childrens Hospital (about 45 min. away)with just her and I. Since the time she was on a heart and apnea monitor and it went off telling me she wasn't breathing. So there I was on the side of I-75 by myself about to have a heart attack because a dumb monitor decided to go off due to "shallow" breathing. Ever since then, I always found someone to go with me. Usually my mother in law or one of my great friends (also a neighbor). I'm more comfortable now that I've had time to process the fact that really...I dont think she's going to stop breathing. BUT...she did screammmmmmmm the entire way there...and home! Ahhhhhhhh! I will continue to find someone to go with me. Unfortunately my mother in law has now moved away, and my friend is leaving to visit her family in India for a few months. (I will miss her!) :-( Any volunteers? Kidding. So a follow up from my last blog...the visit to the GI doctor went fabulous today! I think I have finally made a believer out of her that Brooklynn's situation is quite severe. She will most likely have her Gtube for at least a couple years. And the constipation does not subside on it's own. Not with this baby or any other RTS baby that I am aware of. GI issues with RTS, we're told, need to be treated aggressively. We were finally given the recipe to make 24k/cal Alimentum and will start that soon. Hopefully she will quickly gain weight. She is currently measuring less than 1%tile on the weight charts for the "average child" and less than 3%tile in weight on the RTS charts. She is tiny no matter where you chart her. They labeled her condition at the GI doctor as "worsened" since the last time they saw her. Well DUH! Why the hell do you think I have been trying to get the recipe for 24 cal formula for the last 3 months and an appt. for the last 5 weeks! This was their last shot before I changed doctors. This doctor has been highly recommended by all her doctors and staff at CHOA. She is a wonderful doctor and so kind, just very hard to get a hold of. Until now. Now that she's realized how severe this issue is. Needless to say, all went well. We have the recipe and will be starting this soon. We also have another appt. to go back and see her in 2 weeks! WOO-HOO! Our goal is to make her gain weight! This will help her not only in her development (being able to support herself in a sitting position, crawling, etc.) but also help her to recover from her surgeries a little easier and quicker. Next surgery....September 22. Quite a few visits to the GI before than. Yay!!! For some reason, it has never worked before, but, for once in my payed off to be a bitch. Until next time...