Fourth Time's a Charm?

Caleb's hearing is something we've monitored closely ever since he failed that newborn hearing screening while in the NICU. We've learned that the hearing loss he deals with is mainly the result of fluid that has collected in his ears. He has teeny-tiny ear canals that don't drain well, and he needs tubes to keep that fluid cleared out.  I started noticing that Caleb was having trouble hearing in June, and it had been about eight months since he had a set of tubes put in. He already had an appointment scheduled with the ENT in July, so we waited until then to have things checked out. He was hearing conversation well, but he seemed to have a hard time hearing me if I was across the room or yard. When we went to the audiologist and ENT in July, they confirmed that both tubes had come out and agreed that he needed a new set. We all hope and expect that he won't need to have tubes forever, but he still needs them for now. The first available date to do the procedure at our preferred hospital was in mid-August (Caleb's second day of school). 

His procedure wasn't scheduled to begin until after lunch, so he was able to go to pre-k that morning. I just picked him up before snack time, so that he wouldn't be tempted to eat or drink... no food or fluid before the procedure. 

We had a little extra time before Caleb needed to check in at the surgery center, so we stopped by the NICU where he spent his first ten days. We spent a few minutes visiting with two of our favorite NICU nurses and poked our heads in for a quick peek at the renovated unit. Caleb and I then met Brad at the outpatient surgery unit and got all checked in. Pre-op was super easy and quick, as was the actual procedure. Caleb never wakes up particularly happy from anesthesia, but he calmed down once he had his Kindle and could watch "dinosaurs" (Land Before Time). 

Six weeks later... I took Caleb to the audiologist and the ENT's PA yesterday for his follow-up. While I know Caleb is hearing better than before, his hearing test showed that his hearing isn't quite as good as we'd like for it to be. We're going to give him ear drops for the next week to try to clear out any "gunk" that might be in his ears, and we'll return to the audiologist in December. 

Hearing and Speech Update

I recently took Caleb to see his audiologist. After her exam and Caleb's booth test, we were told that his hearing is great and they no longer need to see him for hearing checks! We will continue to follow up with his ENT every six months or so, but that's it! Caleb has been going to that clinic every 1-2 months since he was only 13 days old! We LOVE the audiologist and the speech pathologists we've seen, so I hate to say goodbye... but at the same time, what a wonderful feeling to take one more regular appointment off of our still busy schedule!

His speech development seems to be exploding right now! He's able to say several words, though he sometimes leaves off the last consonant. Caleb's SLP told me that's common for kids who have had fluid in their ears, because people tend to trail off the ends of words. For someone who has trouble hearing, those ending consonants get lost when people don't emphasize them. Here's Caleb's current list of spoken and signed words

Spoken:
Mama
Dada
Nana
Bath
Ball
Book
Tickle
Bye
Eye
Nose
Why
Amber
Water
Papa
O-pa (Grandpa)

Signed:
More
Ball
All done
Milk
Bye
Eat
Tickle
Please
Open
Up
Water
Block

New Tubes and Normal Hearing!

Caleb had his fifth surgical procedure yesterday. Compared to heart surgery, though, this one was pretty minor. He got his second set of ear tubes placed and had an auditory brain stem response (ABR) test done. The ENT told me after surgery that the right tube had fallen out, but there was still a small hole in the ear drum that was letting fluid drain. The tube in the left ear was blocked, and there was a lot of fluid trapped in Caleb's ear. After the new tubes were placed and the fluid was cleared out, an audiologist did the ABR. Caleb's hearing tested normal for all ranges! That was amazing news and a huge answer to prayer! 

Another set of tubes

Well, so much for not having any surgeries/procedures on the horizon. 

Caleb's audiologist mentioned a couple weeks ago that she thought one of his tubes had either come out or was blocked. She suggested I make an appointment for Caleb to see his ENT. We met with him today, and he said that the right tube is either gone or blocked. He couldn't tell which. The left tube is still there, but it's probably blocked. So... Caleb needs new tubes. Since he'll have to go under anesthesia for the tubes placement, he's going to have another sedated ABR done at that time. 

The person who schedules the procedures is out of the office this week, but she's supposed to call me when she returns next week. I expect that the procedure will be done sometime in June or July.

Normal Range

We took Caleb to have his hearing checked on Friday. It has been a month since his last check and two months since his tubes placement... two months since an audiologist at the local childrens hospital told us that Caleb had mild-moderate hearing loss and needed to get hearing aids. You might remember that rather than going forward with the audiologist at the childrens hospital, we chose to take Caleb back to the audiologist he had been seeing since shortly after he was born. At his next appointment with his regular audiologist, we were told that there might be some hearing loss but no need for hearing aids yet. So back to his appointment on Friday... Caleb responded to most of the sounds/tones by turning his head toward the direction of the sound (which is what we want him doing). The few times that he didn't turn his head, he at least shifted his eyes toward the sound or raised his eye brows. All of those were indications that he did hear the sounds. The audiologist and speech pathologist were so pleased! All of the testing came back within normal range! He will have his hearing checked again in three months!

For the rest of the day, I kept trying to make sense of why we had been told by the other audiologist that he needed hearing aids and why he now has normal hearing. Was there some flaw or miscalculation in one of the tests? Did the audiologist at the childrens hospital just want us to get hearing aids to meet some quota or to bill our insurance? (I've probably watched too many episodes of "60 Minutes".) 

It was during my run the next morning that I finally stopped searching for answers or trying to make sense of it all. I finally realized that God healed Caleb's ears. I have prayed for the last nine months that Caleb's hearing would be restored, and He did it! Thanks to those of you who have prayed with me these last several months. And most of all, thanks to our Lord for the amazing work You've done and continue to do.

Jesus replied, "Go back and report to John what you hear and see: The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised, and the good news is preached to the poor. - Matthew 11:4-5

O LORD my God, I called to you for help and you healed me. - Psalm 30:2

Audiology appointment

I took Caleb to get his hearing checked this morning. We went back to the audiologist who has been seeing him since he was just a few weeks old. She did a couple tests and said that the hearing in his left ear seems to be in the normal range! The hearing in his right ear ranges from normal to mild hearing loss. We will return in one month and repeat the same tests. Hearing aids are still a possibility at some point, but both the audiologist and speech pathologist don't think he needs them right now.

Caleb will go to his one-month post-op appointment with his ORL (ENT) on Tuesday. I think the audiologists at that clinic will do some of the same testing that we did today. I'm curious to see what their thoughts are, since they seemed pretty certain last month that Caleb would need hearing aids.

Tubes

Surgery #2 for Caleb is behind us now. We checked in to outpatient surgery at OU Children's Hospital at 8:00 this morning, and Caleb was taken back to surgery at 10:30. The ENT put tubes into his ears, and then an audiologist conducted an ABR test to check his hearing.

We knew going into this that Caleb had fluid in his ears and that it might be the cause of his hearing impairment. We also knew that the hearing in his right ear hasn't been as good as the left. I honestly expected that Caleb's hearing would be great in his left ear after getting tubes, and I was hopeful that the hearing in his right ear would be fine, too. 

Two hours after Caleb was taken into surgery, the ENT and audiologist came to talk to us. The tubes went in well, and there was minimal fluid. Very good! The audiologist delivered the news I wasn't expecting, though. Even after the fluid cleared, Caleb has mild hearing loss in his left ear and mild (or possibly mild-moderate) hearing loss in his right ear. She encouraged us to have Caleb fitted for hearing aids soon. I plan to call Caleb's regular audiologist tomorrow to schedule another hearing test and to discuss Caleb's hearing aid options.

I know that mild hearing loss is not that big of a deal. He will get hearing aids. I will take Caleb to speech therapy. Brad and I will do everything possible to make sure he hears and speaks to the best of his ability. But... my heart is still broken this evening. I have prayed so many prayers for Caleb's hearing to be restored, and I just don't understand right now why those prayers weren't answered in the way I had hoped. Maybe it'll make sense somewhere down the road.

My precious boy waiting for his turn in the operating room today

The NICU

Caleb was in the NICU for ten days, and those ten days were tough. While we weren't being awakened during the night by our crying baby, we would wake up wondering how he was doing. Rather than checking on him in the bassinet next to our bed, we had to call the hospital, give the receptionist our four-digit security code, and then wait for our call to be transferred to Caleb's nurse. We spent the majority of our awake hours by his side. We usually arrived between 8:00 and 9:00am. Our days were spent feeding and changing Caleb, talking with the nurses, and waiting for the doctors to make rounds. Family and friends often brought us lunch, and we would usually leave the hospital to eat dinner at one of the many nearby restaurants. We returned to the hospital in the evenings to feed and change Caleb, read a bedtime Bible story, and pray. "Lather, rinse, repeat"... for ten days.

October 27th was hard for me. That was Caleb's first full day at the NICU and the day I was discharged. I was so glad that I was able to be discharged from my hospital that day, so that I could spend time with Caleb. But after sitting by Caleb's bed in an uncomfortable chair, going out to eat, walking through the hospital and parking lot, and still processing a lot of difficult news, I told Brad "there's a reason new moms stay in the hospital for 2-3 days after having a baby." I was exhausted, but I wouldn't have done that day any differently. I couldn't not spend every possible minute with my little man. A mom's gotta do what a mom's gotta do.

Another difficult time was toward the end of Caleb's NICU stay. On November 3rd, he was circumcised, had his first hepatitis B vaccine, and did a car seat study. By that evening, he was completely worn out. He didn't finish a bottle, so the nurse had to put his feeding tube back in. Caleb screamed, I cried, and Brad did his best to keep it together for us. Caleb had to take a full day of bottles before he could go home, and that feeding tube going back in felt like such a setback. I was so mad at the doctors and nurses for doing the circumcision, vaccination, and car seat study in one day. Honestly, the nurse we had that day couldn't do anything right in my eyes. She rubbed me wrong the first time she was Caleb's nurse, and I probably never gave the girl a fair chance. I was a frazzled new mom who just wanted my baby home. She and that stupid feeding tube were standing in my way.

Speaking of nurses, Caleb did have several wonderful nurses during his stay. Our favorite was a sweet lady who cared for Caleb his first four days. She and Brad's parents knew each other from years before, and we felt like she really went the extra mile for our family. One of my favorite memories was on October 30th. She wasn't working the next day but really wanted to see the babies in her "pod" dressed for Halloween, so we did Halloween a day early. She encouraged the parents to get costumes for the babies and even told us that Build-A-Bear was a great place to find costumes for our little kiddos. Brad and I had made a playful bet on the 2012 OU-Tech football game a couple weeks before, and the winner got to choose Caleb's first Halloween costume. OU won the game, so Brad got to pick. How appropriate that Build-A-Bear had an OU football uniform.

During those days, we felt such an outpouring of love and support from friends, family, and our church. We had so many more offers for meals and visits than we could accommodate, and we appreciated that some people were willing to postpone those meal offers until after we got Caleb home... I think I've only cooked one meal in the last 2.5 months!

Caleb received excellent care from the doctors, PAs, and nurses. His PDA closed during his NICU stay. Caleb did not pass his state-issued hearing screening, so we scheduled an appointment with an audiologist for after he was released. We also scheduled an appointment with the cardiologist who had been reading Caleb's EKGs and echos during his hospital stay. My job as Caleb's personal assistant was just beginning!