It has been awhile.....

Things have been quite busy around here hence the lack of blog updates. The busyness has not been all medical things, though, so we are mixing the good in with the bad. Caden continues to thrive at home, and brings us so much joy with his sweet little ways. I am getting to know this new little guy more and more every day which makes life a bit easier. The one thing that hasn't changed, unfortunately, is his crazy nights. The lack of sleep is definitely taking a toll.

We did get an awesome night away 2 weekends ago when my mom, for a Valentine's Day gift, took all four kids (yes you read it right - ALL 4 KIDS) for a spend the night at her house. Chad and I were so excited to actually have a whole evening and morning to ourselves. We went to an early dinner and came home and were asleep before 9:00. It was quite the luxury. The next day Chad's parents watched Caden so we could spend some special time with the girls. We had a blast. We felt a little refueled after that nice weekend. We have also squeezed in a few date nights and I had a great girls night out. Having these breaks to look forward to helps me get through all of the doctor appointments and therapy sessions. This weekend we are going to the horse races for my Dad and Chad's birthdays. My grandparents are coming in from the desert to come along, too. Chad's parents will have Caden. It should be a lot of fun. If it weren't for the amazing help of our families I am not sure where we would be (mentally) at this point. I am grateful to God every single day that I am richly blessed with the most wonderful, compassionate, and selfless family. Thank you is so completely inadequate to describe how much I appreciate all that they do.

On to some updates about "Sweet Caden". We have an unofficial surgery date of March 23 for his lip repair. Some things need to be ironed out before it becomes official, but I am really excited to get this ball rolling in the right direction. As excited as I am for the surgery I am also very nervous. Today Caden had a minor surgical procedure of removing his g-tube and replacing it with a mickey button. He is still tube fed; it is just a different, more efficient contraption. Handing Caden over for this brief surgery was tough. It was also heartbreaking watching him get his little I.V. put in. The waiting was the worst. Mind you this was a 20 minute procedure. I do not know how I will manage waiting through a four hour major surgery. He is just so innocent and happy and has no idea of what is going on. It is hard to knowingly put your baby through these things, but it is all in his best interest. What I am excited about is to see what he will look like after the repair. He is already, in our eyes, just as cute as can be so I am anxious to see the results. The recovery could possibly be the most trying part of the whole ordeal because he has to be in arm restraints for two weeks in order for him not to pull all of the stitches out. The restraints are called "no no's" and they look like little casts. They basically keep his arms straight out at his sides preventing him from pulling at his lips. He loves to put his hands in his mouth so it is going to be rough.

Prior to getting this tentative date we met with a new ENT that we love. She is located near our plastic surgeon in the L.A. area. It is quite a drive but most definitely worth it. She was friendly, informative, kind, and answered all of the questions we could possibly think of. I felt at ease with her and I feel completely confidant that she will take great care of Caden. She will be putting tubes in Caden's ears during the lip repair operation. She will also be following Caden very closely with all of his hearing issues. Since we need be very involved with an ENT I am extremely happy we found someone like her. We left her office with big smiles on our faces knowing we wouldn't be back to the infamous other ENT.

Caden's therapy is going well, too. We are at CHOC twice a week for e-stim treatments. We love the therapists there making the sessions easy on Caden and I. The therapists are very gentle, kind, and informative. They really think Caden will benefit from the treatment and are impressed with how he is doing already. I get to sit in this huge swing and rock back and forth while he is getting his treatment. The swinging is supposed to relax Caden and it definitely works. It is pretty enjoyable for me, too!

Caden is now weighing in at 12 pounds 4 ounces and is growing well. He loves to bat at his little toys and coo at his sisters. We love watching all of his little milestones because they are true miracles in our eyes. Each day he is in my life I feel so blessed to have him here. Yes, it is very difficult, exhausting, ect., but he is such a little angel. I really feel he is an angel here on earth that is teaching me so much about life and about myself. His strength through all that he goes through inspires me. The road has been, and will be, rocky and long, but it is full of many enjoyable, breathtaking moments.

Mary

The Good and the Bad....

Caden, as the audiologist put it, was a "rock star" during his hearing test. The audiologist first checked for fluid in Caden's ears and he definitely has fluid. This is extremely common with cleft lip/palate babies. Then we were put into a dark little room with a rocking chair and he was hooked up to the ABR test. I had to get him to sleep before the test could begin and he knocked out in less than 5 minutes. He only woke up once during the entire test. We were able to complete the entire screening in that one visit. That was the good of it.

On to the bad of it; Caden has profound hearing loss in both ears. This was not a surprise to us. It isn't difficult to do an "at home test" for hearing. One such test I put my ipod's ear buds up to Caden's ear and cranked up the volume and he didn't respond at all. Another "at home test" was when Caden was sound a sleep in our room and I broke out singing very loudly and he didn't move a muscle (that time it was probably to his benefit that he has hearing loss). Even though this was no surprise it still was disappointing. I was hoping they would find that his hearing wasn't as bad as they had previously determined.

All hope is not lost. The next step is to clear the fluid from his ears most likely with tubes. After that, we will retest his hearing. Then he will be fitted for hearing aids. If the hearing aids do not help then we will look into cochlear implants. I really want to explore every avenue possible to have Caden hear. I am already starting to sign a little to him. I want to prepare him and us for the chance that he won't be able to hear. I really want him to hear our voices and I desperately want to hear his sweet little voice speaking to us. Sometimes I will have moments where I get so sad thinking he may never even hear his own name. It really chokes me up when I think about that or the fact I may never hear him say,"mommy." I never truly realized what beautiful gifts those were with the girls, and I won't ever take it for granted again (except maybe when they are screaming at me and each other:))

Well, next week we see our oh-so-friendly ENT, and we will be meeting with our plastic surgeon again. She has an ENT we will get to see as well. I am hoping we can connect better with this ENT and never have to go back to "Dr. Rock Personality". It would also be beneficial to work with the ENT our plastic surgeon uses because we could combine the ear tube surgery with his lip repair surgery.

I love the new pictures I took of Caden. His precious little personality is really coming out. He may not be able to hear, but he sure knows how to communicate with his big blue eyes. They just pull me in every time and I am full of joy and happiness in those moments.

Mary

Nervous, but Grateful....

Tomorrow morning will be Caden's repeat hearing test called an ABR. He needs to be asleep for this because they need to make sure he is not registering other sounds or that other sounds are not interfering with the test. He is not going under anesthesia; we just have to make sure he is tired enough by the time we get to the facility that he sleeps through the test. This should be very interesting. The test will begin at 8:00 in the morning. They would like him to be awake for at least 3 hours prior to the test so that he is sleepy enough by the time we get there. So, if you do the math that means he needs to be up at 5:00a.m. He does get up around that time some mornings, but usually conks right back to sleep. I am not sure what we can do to keep a tired, hard of hearing, two-month-old awake for three hours.

I just want to ask for prayers and good thoughts that there will be some hearing seen on this test. How the test is administered is that they attach electro-nodes to Caden's head that will actually pick up on his brain waves. They will be looking for specific spikes of brain activity in response to the sound that they put up to his ears. The test lasts for about an hour. If Caden should wake up prior to the end of the test then we have to come back and repeat this procedure. Oh, Caden, please be very, very sleepy tomorrow.

Whatever the tests results may be I am so proud of how hard Caden has worked in the short month that he has been home from the NICU. He struggles every day to keep his airway clear and this has been especially hard with his cold. He doesn't get the luxury of breastfeeding or any oral feedings that most babies have. He wants to suck so badly, but because of his cleft lip he can't hold a pacifier in his mouth. In times where I get discouraged about things I have to remind myself how far we have come since those early days in the NICU. I posted a picture of Caden right after his heart surgery. He looks like a mess. I am so happy he is home with his family now. Whether he can hear or not and to what ability he may have hearing; I am just very thankful that we have our son. He has really taught me so much about life and love in his little time here on Earth. I certainly would like things to be different for his sake, but I am grateful for what I have gained from having him in my life.

Mary