Charlotte & Cameron Peak
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Cameron and Charlotte were born on July 7, 2003, they were 13 weeks early. Cameron weighed 2.5 lbs. and Charlotte weighed 2.4 lbs., they were both about 15-16 inches long. They were on the high frequency ventilator for at least three weeks and were finally moved to a regular ventilator. After many tries at being extubated we were told that they may both need trachs because of stenosis. We went to Boston Children's Hospital for a second opinion. They thought if we just let them grow for a while they may not need trachs. So of course we waited hoping for the best. After six weeks in Boston, they finally looked at what they were dealing with, Charlotte had improved since being moved and only her vocal chords were swollen. The doctor thought maybe she would only need her trach for a year. Cameron was extubated for 2 weeks, but the stridor never got any better. So they decided maybe they should look at him also. Well, he was 10 times worse than Charlotte and the doctor thinks he will need reconstructive surgery before his trach can come out. She also thinks they have reflux and they have been on medicine for that.
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Cameron
Besides their airway problems, they have been great since they came home. We were in the NICU for 4 months and we were warned that the would be back in the hospital in the winter with pneumonia. Well, we almost made it, but they went in the hospital for 12 days with bronchiolitis and are now home again and doing fine. Besides the trachs, they had other very common issues of preemies, BPD, PDA, ROP (STAGE 1), a staff infection from an IV and one bout of pneumonia when we moved them to Children's.
My husband and I were absolutely terrified to take home two tiny babies with trachs. But after a couple of weeks, we were very comfortable and would rather do all the care ourselves, instead of letting nurses do it. I am so scared that something will go wrong that I am much more comfortable taking care of them myself. No one will care for my babies like I do. We have two older children ages 11.5 and 13 who are extremely helpful in the care of the twins. They both know how to suction and take care of the babies, just in case they need to. If anyone has any worries, just believe in yourself and think of the babies.
At eight months of age, Cameron is 14.8 lbs. and Charlotte is 13lbs. We couldn't be more thrilled with their progress. We are hoping the trachs will be out by the time they are two, but I don't want to plan on anything.
Update, June 2004: May,2004, Cameron and Charlotte were both in the hospital this month for a bronch, endoscopy and a ph probe. The bronch showed no change they both still have much edema, the doctor is not quite sure what the problem is, she thinks it is still reflux even thought the endoscope and ph probe have showed nothing, they both came back within normal limits. She also thinks they may have allergies, so they have switched them to Neocate formula and kept them on reflux meds just to see what the change might be. They are going to see an allergist at the end of June and back to the ENT to see if anything has changed. We are a bit frustrated because no one can tell us anything different. They are both growing great, Cameron at ten months is 18 lbs. an Charlotte is 16lbs. I hope we find something out soon. If anyone is in a similar situation we would love some feedback.
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Update May 2005: Cameron was seen in April of 2005 and the
swelling in his vocal cords is mild so he can now have the LTP with an 80%
chance of success so he is scheduled for July 12. He is doing terrific
otherwise he does some signing but isn't as concerned as Charlotte. He has
caught up to his age and is an extremely happy little boy. Charlotte was
also seen and she looks about as good as Cameron she can also have the
surgery but we haven't quite decided if she should yet she is smaller than
Cameron and is still on O 2 we are just not sure if she is quite strong
enough yet. They also removed a cyst in her airway which was blocking the
airway above the trach and below the vocal cords so he thinks she should be
able to vocalize more. We may wait until next year for her surgery to see if
she grows more and gets off the oxygen. If anyone has had any experience
good or bad with this surgery and the medication afterwards we would sure
like some feedback. Charlotte is also doing great although not walking yet
she loves to climb on everything. She knows a lot of sign language and seems
to like using it. We will update again after the surgery.
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Update: July 2005: Cameron had LTP surgery last week (July
12) , and was sedated for seven days with morphine, versed and another paralytic
drug because he kept fighting off everything else and they were afraid he would
get his breathing tube loose. They took his breathing tube out on Tues, July 19
and as of right now he is doing okay. He is breathing fine and has been
decannulated, but he has some collapse in his right lung because he is not
coughing. I hope that is all it is, they think the surgery sight is fine, he had
a posterior and anterior graft done and Dr. Nuss was very happy with everything.
I am hoping this is all normal and he will be okay in a few weeks. Please let me
know if you have any other suggestions.
- Cameron's Hospital Photos July 2005
- Email Alison and Allan Peak
