Hospital Visit Today

Today ended up being a rather long day. So here is the short version of what we found out:

1 - Cameron's hearing test was redone and it was similar. They feel that hearing aids will give Cameron good amplification in her right ear for her to hopefully resume normal speech language development with the help of a therapist. They don't know whether they will ever be able to amplify enough for her left ear to hear speech sounds but she may be able to hear environmental sounds like loud sirens, horns, cars, etc.
2 - They want to recheck Cameron's ears again in 3 months to make sure that she does not have degenerative loss in her ear and if it is getting worse...Cameron may be a candidate for cochlear implants. Right now that is currently off the table.
3 - We picked out cute pink hearing aids and a sparkly ear mold so that she will look girly and fashionable. We figure - its not like people won't be able t tell that she has hearing aids so we might as well make them look cute!
4 - Cameron's reflux has been getting pretty bad again. So much so, that her physical therapist insisted she see the doctor yesterday at the last minute. At that appointment we found out that Cameron has resumed good weight gain and is now 8 lbs. exactly. We also found out that we need to increase her medication but that if that does not stop then we will begin adding cereal to her. We are also hopeful that the monitor may be going away within the next month or so.

I think that is the short of it. We were also told by a speech person at the hospital that it might not be easy to get Cameron started with speech therapy. My prayer is that she is wrong. We will be meeting with different folks to hopefully begin to set that up. Cameron's hearing aids should be in in about a month - so hopefully she will be hearing all of us soon.

Our First Illness

Well, it has struck...we think. A few days ago I started sneezing and then my throat started to be a little sore. I had heard that strep was going around...so I decided to run to urgent care and get a quick test...negative. But upon examination...my throat had red bumps that are symptomatic of strep throat. So, they are sending my test up to the lab and I am now on antibiotics. However, I cannot have any close contact with any of the girls for the next 24 hours - does anyone know how unbelievably difficult that is going to be??? Very! When they are crying, I can't fix it and it kills me. The good news is it is only 24 hours. The doctor said that it could just be allergies but because of the bumps we are going to do the medicine just in case. So, the plan is to sleep like crazy for the next 24 hours so that I can finally relieve Seth tomorrow night and let him sleep all night. I just pray that the girls do not get it! I am so scared because a) they are preemies and more at risk for illness and b) Cameron's immunity disorder. I pray that none of the family gets sick. We all depend on each other. Please keep us in your prayers. We go this Tuesday for Cameron's ENT appointment and to get fitted for her hearing aids.

Answers to Questions

1 - Why is the PT saying "don't let Cameron stand!" - She says that it can encourage those muscles to stay tight instead of being loose and relaxed which can lead to muscle tone issues. We are allowed to let her stand once she starts pulling up on things - which is quite a ways away. She says that if we let her do it too much and those muscles get too tight then she will walk on her tiptoes when it comes time to walk...which we do not want! I am actually getting more and more concerned about Cameron's muscle tone because she can be so stiff and rigid...especially during feeding - which is probably part of the reflux. I have called the PT at Duke and am having their developmental therapist assess her this week to see if I am completely overreacting or if we do have reason to be concerned.
2- What type of hearing loss - the audiologist thinks that it is sensorineural hearing loss but that is a educated guess...we see the ENT to confirm this next week.
3 - Sign language - No we haven't started sign. To be honest we have heard so many conflicting things and I have been waiting to hear from the people from Beginnings (local hearing impaired resource from NC school for deaf and hard of hearing) to see what they would recommend. I am trying to read as much as possible and trying to keep talking to Cameron - which is what the audiologist said to do. Cameron still reacts to us and will smile and makes my heart soar when she tries to talk. I know that she can hear some things...it is just very limited I think. She said that it is imperative that Cameron see us react appropriately to her needs so that when she can hear she can put them together. How soon should you start sign? We are only at the smiling and cooing stage - should we begin already if we choose to do it?

Marilyn, it seems as if you are very knowledgeable on the subject of hearing impairement - any information or advice you have would be wonderful. I would love for you to email me at lele307@gmail.com

Cameron's Appointments

The eye doctor visit went well this week. The hemorrage does not seem to indicate that anything is leading towards retinal detachment - which we are extremely excited about. It is still there but has spread out, allowing the doctors to be able to look under it to be sure. Both girls will be going back to the doctor (along with their other clinic appointments) in July. Cameron's next appointment is June 16 for all of her hearing aid stuff. I am so thankful to have been turned on to a free resource for parent education for parents of hearing impaired children. I am in the process of signing Seth and I up for a distance learning course.

The girls are doing well. We are still having the ups and downs - good days and bad days...but all babies have those - ours are just times 2! They are wiggling and squirming like crazy and both girls are now cooing and interacting with you - those are the most joyful times of the day! Reagan is working hard on rolling - she wants to so bad - you can almost see it on her face. Meanwhile, Cameron would rather try to stand (even though we have been given strict orders to not allow her to do that from the physical therapist so we do our best to keep her from doing so). Both girls love their swings and love their play gyms...most of the time. But most of all they love Aubrey. She can bring smiles that none of us can get. She loves to come up and say "tickle, tickle" and the girls just smile so big for her. They all love each other very much!

Apnea Monitor

Ah the monitor. I fear that it will be staying with us a bit longer than I wanted. For some reason in the past two weeks it has gone off for apnea and it hasn't done it since she has been home. I think that it is because Cameron is sleeping so soundly but I don't think the doctors will let her come off until they stop. Please pray that things would calm down and that she would be well enough for the doctors to take her off of the monitor or if that is not going to happen that we would see the cause for the apnea that she has been having! I can't help but wonder, though, how many of us have apnea episodes when we are in a deep sleep.

Cameron also has her eye appointment tomorrow to check on the hemorrage in her eye. I pray that it has healed up all on its own.

Thanks again for keeping our family in your prayers.

Smile!

The girls have really begun to smile and today was actually Cameron's first day really smiling and I caught it on camera! Had to share those and a few other pictures of our little angels!

Reagan

Cameron

Here is a picture of Aubrey enjoying some yummy chicken parmesan that a friend made for us a couple of weekends ago - thanks Jill! We have had so many sweet and generous people make us dinner that I don't even know where to start. Thank you all so much! This night I gave Aubrey her plate, turned to pour her a cup of milk and when I turned around...this what I saw - she said, "Mommy this good! I LOVE noodles!" Aubrey has loved all of the meals and I have appreciated not having to worry about cooking...and Seth, well, he hasn't enjoyed it at all except the guy who can't gain weight all of a sudden can't fit into some of his pants anymore - THANK YOU ALL!

I almost forgot. The girls were weighed yesterday at the doctor. Reagan is now 8 lbs. 3 oz. and Cameron is 6 lbs. 15 oz. We are still working hard to be sure that Cameron maintains good weight gain. Hopefully she will be catching up to her sister soon!

Cameron's Hearing Test Results

Today at Duke we found out that we are about to enter even more unfamiliar territory with Cameron. She went in for a more specialized test for her hearing...it wasn't successful so they redid the original hearing screen - she failed again in both ears. So, this time she had more diagnostic tests done. The diagnostician found that Cameron has moderate to moderate/severe hearing loss in her right ear and severe/profound loss in her left ear. We asked if there was any way of knowing the cause and she said no. This was her first diagnostic test, however. We will go back for another test in three weeks. On that same day we will meet with an ENT, who will determine if there isn't a blockage of any sort that could be the cause...however, after the tests today, the diagnostician said that she did not believe that it was. She believes that this is pretty permanent hearing loss and doesn't expect for the results to change much. On that same day, Cameron will have molds taken of her ears to be fitted for hearing aids. We will go back a few weeks later to learn how to use the hearing aids. We will begin to work closely with a speech and hearing therapist to learn how we can best serve Cameron.

The audiologist said that she has a very positive outlook for Cameron right now because her hearing loss has been diagnosed so early and that with therapies and hearing aides that she hopes that Cameron will be able to achieve normal communication skills. Seth has been so amazing and positive through all of this - the perfect husband. Today he said, "You know why I have always liked things like x-men and stuff? Well, it is because they were all unique because of their special powers. That's kind of how our family is." I almost started crying because I thought that it was an amazing way to think about all of this. My prayer is that the hearing aids would be an effective tool for Cameron to be able to hear and that Seth and I would be able to learn how to make our family and our home a supportive environment to nurture Cameron in the skills that she needs to acquire.

As a precaution, Reagan has to go back in for additional hearing tests - since the girls are identical but they do not expect to see much right now. They will just do what is called an OAE (I have no idea what that means) and if she passes, she will not have to have any additional tests.