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, July 30, 2010
So where do I start. Hmmm. When Brooklynn was born, they were giving her Similac Advance in the NICU. She did not tolerate it well. After we brought her home and after talking it over with her Pediatrician, we switched her to Similac Alimentum. She tolerates this much better! (Yes, I wanted to breast feed but the doctors wouldn't even let me attempt it. After consults and medical supplies, I pumped for her as long as I could.) To shorten my story, Brooklynn at 6 months old now, is still on Similac Alimentum. It is 20 calorie formula and she gets 31mL/hour for 20 hours a day through her Gtube. As time goes on, I have upped and upped the volume on my own by just figuring out when she would get hungry and not getting enough. (Her GI doctor should have been telling me all along when to up it and to what.) Im pretty sure this is where we've maxed out for the moment at 31mL/hr. I've tried to up it but her tummy is only so big! She can only tolerate so much and when she can't, I back it back down to the max that she CAN tolerate. This is the time where she's supposed to be getting baby food. She cant. She just failed another swallow study a week ago and can still have nothing at all by mouth. She aspirates EVERYTHING! So what to do? Well, we can't up the volume and we can't feed her baby food or anything thickened through her tube or it will clog. We have to up the calories!!! Allllll these problems are the problems for her GI doctor. We haven't seen her GI doctor since May 19th and aren't scheduled to go back until August 20th! ARE YOU KIDDING ME!!!!! We have had to wait 3 months to see her GI doctor again! This is ridiculous! This baby see's 9 different doctors, and except for her 2 geneticists (who we only see once a year each), we see her GI doctor the least! HELLO!!!!!!!! This is most of her problems! Sure she still has a tethered spinal cord and needs a knee reconstruction but those are quick fixes with a surgery and boom! Healed! As quick as she aspirated during her swallow study, this baby is going to have her Gtube LONG TERM! It could be another couple years before we take it out. On top of all this, she's constipated! GI GI GI!!!! I have attempted to call her doctor and get some answers 5-6 times in the last couple weeks. This baby is HUNGRY! I have told them this over and over and over! I can't just concoct my own recipe and assume it's going to turn her 20 cal formula into 24 cal's. I can't just feed her baby food (which by the way she lovesssss. :-( ) and take the chance of her getting pnemonia or upper respiratory issues. I am at a loss! A couple weeks ago I was told I was going to get a phone call right back with the recipe for 24 cal formula...no call back. Last week they told me they were going to send me by mail the recipe for the 24 cal formula....nothing! I am not kidding when I say...Brooklynn is getting sick! She is crying at night because she is so hungry. Her eyes are red and puffy. So yesterday...what did I do, I gave her banana baby food! I had to! She is starving! I would rather deal with an upper respiratory infection than have her starve! So I called her GI doctor again this morning. In tears of course. Upset and threatening at the same time! Oh I can yell and cry at the same time. Call me talented. Ha. I told them that this was the very very very last chance they were getting to help me. I told them that instead of having to make her own formula, I wanted to use Duocal in her formula to add more calories which is what I've been told quite a few others have done with their children and it has worked well. I also told them that I am demanding for Brooklynn, my 6 month old who is growing slow and needs her intake changed often, to be seen in their office every 6 weeks at the LEAST, preferably every month! NOT every 3 months! I told them if this doesn't happen, and Brooklynn get's sick because they were able to help her and do something about this but didn't, I will switch doctors and report them to everyone I can and know that can make their lives hell! You have no idea what A bitch I can be when it comes to my children! And if it's your fault that she is getting sick and not getting enough nutrition, when you can clearly help her...I will do what I can to make you miserable! So of course, again, her nurse says that she PROMISES she will go talk to her doctor and call me back TODAY! HAHA! Thanks for listening and I'll let you know the outcome. I have been told by numerous other physicians and hospital staff that she is the "best!" Should I not receive a call back, I will let you all know who she is!!!
Saturday, July 24, 2010
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to
You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to
But there’s been a change in the flight plan. They’ve landed in
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than
But everyone you know is busy coming and going from
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to
Friday, July 23, 2010
You could offer me a billion dollars, a lifetime of bliss, and the promise of a baby girl who was 100% completely healthy and she would live to be 102, yet, I would not give her back to you. I would not trade her for the world. But I will tell you this. I hate RTS. Absolutely hate it. I will never understand why you put these children through what you do. Why the pain and suffering? Why make life so much more difficult for them than it should be? I don't understand it. I don't expect I ever will. I have kept my faith that you have given me and my family the strength to deal with this and to help Brooklynn through all of her struggles, but why have you given her these struggles? None of this makes any sense to me. I am trying to find the answer to this. She is the most beautiful amazing little girl I have ever seen and could ever imagine. She is always so happy and so sweet and she can put a smile on the face of anyone! And I mean...ANYONE! She smiles and a stranger walking by will stop to talk to her. Did you do this because it's true, nobody is perfect? You made her so beautiful, friendly, loveable, and just truly amazing. Is that why you had to throw RTS in there? Because she couldnt just be who she is without the struggles. I am keeping my faith in you, and I hope one day that you will show me the answer to this. I thank you for what you have given me. But why have you given Brooklynn what you have given her? Why have you had to make her life so much harder?
Tuesday, July 13, 2010
Wednesday, July 7, 2010
Friday, July 2, 2010
After the discovery that Brooklynn may be missing her left knee cap, we have received the long awaited results of her ultrasound. It turns out that she DOES have a left knee cap. :-) It is smaller than the right one and off to the side (dislocated.) This will require a knee reconstruction. One thing after another right? I always try to look at the positives of these situations, so here's what I've come up with....1. At least she HAS a knee cap which gives them something to work with. Still growing, I wouldnt have a clue what they would do had she not had a knee cap. With her 5 months old, seems like it would be almost impossible to have to put an actual knee cap in place that would be able to grow with her. 2. At least the Orthopaedic surgeon has agreed to work with the Neurosurgeon to complete both surgeries at once. At first, the Orthosurgeon was totally against the idea and wanted to do his separate from the Neurosurgeon. Thanks Mr. Mean orthosurgeon. Dont mind the fact that she has a syndrome in which anesthesia could be a scary process and it may be better to keep her from having to go under as much as possible. (The orthosurgeon is not my fav!) Surgery on her spinal cord and her knee will both be completed at the same time with the neurosurgeon going first. 3. At least we are getting all this out of the way while she is still so young and won't remember. 4. With any luck at all, hopefully we wont have any more ortho issues and can avoid this doctor. He can keep his arrogant attitude, bad bedside manners, rude office staff and 2 hour waiting room wait times to himself. We dont want it anymore. Soooo, there are my positives. I can also add that Egleston has the best grilled cheese sandwich I've ever had. Seriously. They put a couple different kinds of cheese on it and it is super yummy. But I would trade that for not having to go back ANY DAY! So September it is. Back to the hospital for another stay. It is a typical 36 hour stay required after surgery for her spine, and Im not so sure about her knee yet. Apparently to ask the orthosurgeon any kind of questions you have to schedule an appointment before surgery. Ugh. And then there is always getting her back up to a good amount on her feeds before we can go home. This time shouldnt be so tough though since this is not a stomach surgery like her last 2. Hopefully we'll have more answers soon. I'll let you know then. For now.... XOXO, Katie