Calleigh, my sweet baby girl, was born in June 2009. She was born with many health issues. Before she was born we knew she had a cleft lip and a hole in her heart. Upon her arrival we learned her lip was more of an incomplete lip (luckily). She had two holes in her heart and not just one. We were shocked to learn she also had Hirshprung's Disease. Basically, a large portion of her colon did not have the cells to make her go the bathroom. At 9 days old she had surgery and a colostomy bag placed. She spent 31 days in the hospital and came home on a heart monitor and with a colostomy bag.
At about 9 weeks old Frank found Calleigh not breathing in her crib. I had to give her rescue breaths and she started to breathe again but just barely. She spent a week in the hospital with breathing troubles caused by an upper respiratory infection.
At 8 1/2 months old she was big enough to have her colostomy reversed. There was no guarantee it would be successful but the surgeon was very hopeful. She wound up needing 1/3 of her large intestine removed. We were fortunate and it was successful. She now poops like the rest of the world :) The surgery was extremely stressful on her little body. She only weighed about 15 pounds when it was performed. She came out of the surgery great and was off the vent by the time I saw her. That all changed very quickly. She swelled with fluid so much you could not recognize her. It closed her airway and she stopped breathing in the room. It was like a nightmare to watch what was going on around her bedside. They had to bag her to bring her back. She was put onto a CPAP machine to help her breathe.
There were lots of disagreements about why this happened. The surgeon and the PICU doctor had very different opinions. What should have been a two day procedure turned into a week. It was horrible for us but must have been torture for her.
Her cleft was repaired in April 2010. Prior to this surgery she had a bronchosopy performed to make sure she had no obstructions to cause her to stop breathing under anesthesia. She was cleared for surgery and did wonderful. Her lip has healed beautifully. She might need a slight revision on her nose when she is older but we will see as she continues to grow.
One of the holes in her heart closed on it's own. The other hole remains open. It is not showing any signs it will close on it's own. The only solution will be surgery. It will probably happen in the next year. She just turned two so probably when she is three. But who knows, maybe it will close.
Calleigh also suffered from undiagnosed acid reflux for a long time. She had NONE of the normal symptoms except refusing to eat when she was an infant. It took months to get her to eat more than a bare minimum. Once she was medicated she did great. She actually eats more than the boys at this point. She loves to eat and can't get enough.
Her kidney reflux has resolved itself as well. This was totally unexpected. It was Grade III and usually would require surgical intervention. We dodged a bullet and she was fine after one year.
So, Calleigh is followed regularly by Cardiology, Endocrinology (she is small for her age), plastic surgeon, neurology (they like to track her progress. But they feel she is neurologically fine), gastroenterology, stomach surgeon, eye doctor (she has Duane Syndrome in her right eye) She can see just fine but her right eye cannot move to the right. It can go up and down and to the left but the nerve telling her eye to move right isn't firing. We have idea why. She has had an MRI of her brain which is normal.
She has been seen by orthopedic doctor because she is not walking yet at two year old. They gave her a clean report. She was referred for UCBJ's for her ankles. Calleigh has low tone and these should help her walk. That said, she is about to walk any day (without the ankle braces since they are not in yet). She receives physical therapy once a week and developmental therapy once a week.
Bottom line with Calleigh, she is tracking about 7 months behind on her gross motor skills. Her fine motor skills are not behind at all. Her doctors feel due to her low tone and not being able to receive any tummy time for 8 months due to a colostomy bag she is just playing catch up. Not to mention she had two surgeries where her abdomen was cut clear across.
Seems like a lot going on for one little girl but she is the happiest of happiest kids. She may not say much but she comprehends EVERYTHING! She knows everything you ask her. She has taken to signing while she cant talk yet and you only need to show her a sign once and she can do it. I have no doubt she will catch up on her motor skills and be just fine.
Updated March 2012...
Calleigh the medical mystery continues to baffle the medical professionals.
As a Mom sometimes it is what needs to be done. We know our children the best and while professionals may seem to always have our kids best interest at heart sometimes it might not be enough. A fellow Mom blogger just wrote about making a big change in her son's life and she went with her gut. She knew her son needed it and I applaud her for it.
While Calleigh continues to progress. I am thrilled with her huge leaps she has made over the last few months. I have been told Calleigh has low tone. Her doctors have contributed her late crawling, walking and most of her gross motor skills delays on her low tone and also the fact she had two surgeries cutting her belly clear across. Add to that she had a colostomy bag for eight months and she didn't get the tummy time she needed.
I get all that. Trust me, I do. However, I don't feel Calleigh's amount of low tone equal the amount of unsteadiness and unstability she has while walking. She still doesn't climb stairs yet. She has a habit of holding her ears all the time. I think somethimg else is going on. I don't know what but to me it seems like it's related.
I made an appointment with a new ENT who also specializes in balance issues and disorders. He works in conjunction with an audiologist. We were able to get in to see him on Friday. (Friday will go down as one of the worse days for many reasons I will blog about later)
To say it was overwhelming is not quite the right word. It turned out to be over two hours. First you are seen by the ENT. We went over her extensive medical history. He was instantly interested in her mouth. He asked me if anything was wrong with her lower lip. I was shocked beSylvester Stallone. He basically wants to keep an eye on it. I have been watching her like a hawk since and have not noticed anything but who knows.
He checked her ears quickly and said he saw some fluid. She has only had one ear infection in her life and she didn't have an infection on Friday. She just had some fluid. He also said he was "impressed with the size of her tonsils". He asked if she had any sleep issues or if she has ever had a sleep study. Nope. Of all the stuff she has had a sleep study was not on the list.
Next was the audiology appointment. Calleigh was not so thrilled at the beginning when they had to check the pressure in her ears. One ear came back as having fluid. Next we went in the booth. She LOVED this part. She was so excited to wear the headphones. She was a pretty good reliable patient if I do say so myself. The results?? Mild/moderate hearing loss bilaterally (Melanie Ribich...I could not help but think of you for some reason when I was hearing this news. You were so supportive when I learned of Ciaran's loss) Calleigh has had her hearing tested before (several times) and has passed. The only reason at this point I am not losing my mind is because I am hopefully optimistic the test was not accurate because of the fluid.
We were seen again by the ENT to go over the results. We talked for a long time about the results and all my feelings about Calleigh's well being. He said the hearing loss could be caused by the fluid but it is possible for her to have hearing loss after the fluid is gone. Apparently, Duane Syndrome can have hearing loss associated with it. I feel like an idiot for not knowing this. I did so much research when I found out she had this and never came across this fact. No other doctor ever mentioned this to me either. That said, Calleigh has had her hearing tested multiple times in her life so I don't feel like a complete failure.
The end result?? She is scheduled to have tubes place on May 5th. She will also have a sleep study done before the tubes. Once we see the results of the sleep study he will determine if she needs her tonsils and adnoids removed. After the tubes we will retest her hearing and pray the fluid was the problem. We didn't really address the balance issues except to say if she has fluid in her ears it can cause her to have balance issues. Bottom line he said we don't know what Calleigh's potential is on a scale of 1 to 100 (or for any kids) but we know with fluid in her ears and perhaps sleeping issues due to her tonsils we know she won't reach her potential. So let's start with the tubes and go from there.
It was a lot of information to take in all at once. I have been processing it all weekend. My plan is to just get to the next step and take it from there. One day at a time.
cause I had never noticed anything and no professional or anyone for that matter has ever mentioned it to me before. He said it seemed like her left lower lip could not fully move down.
According to the geneticist who saw her "the chances of all these thing happening to one child with no "syndrome" are one in 9 million.....well, we are the one in 9 million. Too bad we didn't have those odds when we played the lottery!
