Buhler… Buhler…

As many of you know, Sienna has had, or attempted to have several ABR (Auditory Brainstem Response) tests since she was born. I say attempted, because twice now, the machines have failed on us. The ABR is the test that the Audiologists have been doing to check her hearing.We finally got the last one done about two weeks ago. This time they were able to get a clearer test then any of the ones previously done. Unfortunately things did not turn out as well as we have been hoping for. The test show that Sienna does indeed have hearing loss. Even though she technically passes in one ear, both ears are considered to have hearing loss.

Josh and I are both trying to have a positive attitude about this. We know it is only a minor hearing loss and things could be much worse. I think I have been partially in denial the last two weeks, but tomorrow we will be starting the process of getting her fitted for hearing aids, so I feel it is time for me to face the music.

Luckily for us, her hearing isn’t horrible. I am under the impression that the hearing aids are more of a necessity to help her learn to speak properly. I know she hears our voices and recognizes them. Her pediatrician actually told me that if she had not seen the test results herself, she would not believe there was any hearing loss, because of how well she babbles and mimics sounds.

I feel so grateful that it is not as bad as it could have been, but yet I feel sad for her. She is such a sweet and happy little girl and I know there will be trials ahead of her. When I told my dad the news, even though he didn’t say much, I could see his heart breaking. He has lived with hearing loss his whole life, and he knows personally those struggles and trials she will have to face.

For now, we try to forget about those struggles and move forward to help her in any way possible. Hopefully with in the next two weeks she will have a set of hearing aids. Josh and I are in the process of finding resources to learn sign language, not that she will be using sign language as her main way of communication, but there is a good possibility that she will be speech-delayed for the first few years. The sign language will just give us a way to communicate with her while she is catching up.

Even though hearing loss is not a new thing for us, I think this will be a learning experience and an adjustment for us. So to all of our family and friends, please bear with us as we all adjust and learn and find the best ways to help Sienna have a normal and wonderful life. We love her so much and she has brought so much joy to everyone around her.  She is an amazing little spirit and I know she will do great things with her life!

Tuesday was the big day. After rescheduling this day twice, it finally happened. We took Sienna into Primary Children’s at about 8:00am. She was supposed to head into the operating room at 9:30, but unfortunately they were already behind schedule. It wasn’t until 11:30 am that they were finally ready for her, which made for a very cranky and super hungry baby. Due to the fact that she is on thickner, she was not allowed to have any food or water after midnight the previous night. Despite that, we were still able to get some smiles and laughs out of her as we waited.

Finally it was her turn. They allowed us to carry her most of the way to the OR, before handing her over to the anesthesiologist. That was the first time through this whole experience, that I truly just wanted to melt down and cry. Luckily Josh was right there with me  reassuring me that all would be okay.

We then went to the parents waiting room. The tubes didn’t take long at all, so the ENT came and talked to us with in 15 minutes, and reassured us that she was doing great.

Feeling a little better, and knowing the next part was going to take over an hour, we headed to the cafeteria. I must say, the cafeteria wasn’t bad, but Josh and I agreed IMC has the best cafeteria so far. We feel as though we are becoming food critics for all the local hospitals. Hopefully this self proclaimed profession will come to an end soon.

After a very yummy cheeseburger, and some scrumptious potato wedges, we headed back upstairs. It wasn’t long until the audiologist came out to inform us their equipment failed on them. A little frustrating for us, since we were really hoping to finally have the results for the hearing test, but if some equipment was going to fail, I am glad it was the ABR machine and not something more important to her safety.

Finally, the pediatric surgeon came out. He informed us everything went great. She was doing well. During the surgery, they discovered that there was a second hernia. We knew that was a possibility so this was not a surprise. Luckily they were able to take care of both of them very easily.

We spent a few hours in Post Op. Finally around 5:00pm we got the ok to head home. Sienna spent most of the evening sleeping, due to the fact that the anesthesia still had not worn off.

It has now been two days, and she is doing great. She gets a little cranky when her pain medicine starts to wear off, but other then that she is back to being our  happy, smily, little Stitch!  She is such a trooper and the toughest little baby I know! We love you Enna!

Recently we have had a lot of people asking how Sienna is doing, and I realize Josh and I are both horrible at keeping everyone updated and informed on her situation. I really do appreciate how many people truly do care about our sweet little Enna and how many prayers  have gone out in her behalf.

At the beginning of February we were finally able to get a swallow study done on her. What amazed me was that it took until she was almost 3 months old to have it done, because the doctors had been talking about doing one since she was in the NICU. Her swallow study came back showing that she did indeed have problems swallowing, and was aspirating. As a result she has now been put on thickner (which is basically gel packets that we mix with her milk to make it thicker).

She had an appointment with her pediatrician about 1 1/2 weeks ago. She is doing amazing and is right on schedule for all the physical things she should be doing. She smiles, and coo’s, she rolled for the first time while we were there, and she has great muscle control. According to the charts, she is very tiny for her age, which we expected since we have been monitoring her growth very closely, and the fact that she still has a few newborn outfits that she fits into. As I am writing this, she is wearing the same outfit that she wore home from the hospital, but to be fair it was big on her then, and she barely fits in it now. She is in the first percentile for weight and height. She is growing, just very slowly. As a result she is now on a calorie packed diet. So now when I make her bottle I feel like some gourmet chef or chemist (because they are so similar) mixing and measuring different ingredients and trying to get the right consistency. Note for all you young’ns out there, math is not just a text book subject, you will use it in the future:)

Also, at her pediatrician appointment, we discovered that she has a hernia. So Josh and I met with a pediatric surgeon last week. I realize a hernia is not a big thing to be concerned about, but I would be lying if I said it didn’t break my heart a little to be talking to a surgeon that was going to operate on my 9 1/2 lb. daughter. I am just glad it is a small outpatient surgery. I can’t even imagine how parents feel when their children are truly sick and in need of life threatening surgeries.

Many of you may have heard us talk about her hoarse cry and hoarse voice. She has had it since birth. That was actually one of the first things I remember about her delivery, all the nurses were commenting on her cry. After a lot of talk and speculation abut possible cyst, vocal cord paralysis, and possibly more operations, they did a scope down her throat, and it turned out good. The ENT said she had a beautiful throat, with perfectly normal vocal cord movement, which he should know, because there was a lot of crying involved in that appointment. So as of now, we don’t know what has caused her voice to sound hoarse, and it may stay that way for life. She does have acid reflux. Not the spit up kind, but the kind that just stays in your throat and then goes back down. That may be the cause, but they haven’t decided yet. I personally think her voice is really cute. She has been given the nickname Stitch from “Lilo and Stitch,” because that’s what she sounds like. She might grow out of it, but if not, she just might end up with a really sexy, smokers voice when she is an adult (which I have been told you can make great money doing voice overs if you have a voice like that!)

Finally, many people have been concerned about her hearing, especially since my family has a history of hearing loss. For those of you that don’t know, she has failed all of her hearing tests in her left ear, and just barely passed in her right ear. Both ears have a positive test result for fluid. Now that she is finally old enough we will be doing an operation to have tubes put in her ears and then at that point they will do another ABR and find out if there really is any hearing loss. I am hopeful that after the fluid is gone, she will be able to pass with flying colors in both ears.

Luckily for us, the two operations that she will need to have, (one for the hernia and one for the tubes) are so minor, that our doctors have worked together and they will be performed at one time. This way she’ll only have to have anesthesia once, and she should be able to come home that same day.

We feel very blessed that everything has turned out as well as it has. She is such a joy to our family. I just can’t wait for this all to be over so that her life will be just a little more comfortable and easy. She definitely is a trooper. The doctors are always amazed at what a happy and sweet baby she is, considering all that she has been through. We love her and can’t imagine life without her!