Hearing Test phase two

A passing grade

Cayla had her third hearing screening today. The first two were simple tests. She failed both of those with her left ear. Today she had to go to sleep for the test. So Judy kept her awake this afternoon. When we got to the testing facility Cayla went to sleep pretty easily. This test measures the amount of sound she hears by monitoring her brain waves.

The audiologist tested her left ear first and Cayla slept right through. It was perfect--praise God. The diagnostician said there was a delayed reaction, but she did respond as low as 20 db (the lowest they test for). The right ear was perfect.

I am so glad that she was fine today. That is one less thing for me to worry about. Now we just have to get her through the surgery and we will be great.

I am so thankful for this child and for the lessons I learn from her. She is teaching me a great deal about faith just by being here.

I am starting a new job on Friday so I may not post for awhile. But there will be updates during and after surgery.

Baby Party and milestones

What a beautiful thing

On Saturday we went to a baby party. Zane couldn't quite understand what a baby party was until we got there. He kept asking whose birthday is it. Too funny. He and Amanda were very well behaved. I was so glad. I hated to drag them along to a baby party since they aren't babies, but what is a single mom to do?

The party was lots of fun. We mainly just visited and compared babies. Angela had prepared a fun activity for us. We got to fill out our name, our babies name and date of birth. Then we went through to see whose baby (at birth) was the biggest, smallest, earliest to arrive etc. It was fun. She also had some questions about motherhood at the bottom. They were very thought provoking. Overall the party was a grand sucess. 7 babies there, and only two boys.

One of the babies is two weeks older than Cayla and she was showing off her rolling over skills. I told Cayla to watch how Aubrey did it and then she could do it too. Before that Cayla could get on her side and then get mad because she was stuck. On Friday night I was sure she was going to make it over, but she didn't. Probably because I had the camera on her.

On Saturday night, I decided to move Cayla to the big girl crib in Zane's room. I took out the bumpers and made sure there was nothing to hurt her. Then I put her to bed in there. She went right to sleep with no problems. I was of course up checking on her constantly. Even with the monitor on, I couldn't sleep. When I went to check on her at about 1:45 she had rolled over. So of course I missed that, sneaky little thing. Then yesterday she wouldn't do it again. She went back to roll part way and get stuck. But she did hit two milestones at once. Sleeping in the crib and rolling over. She is a big girl now. Zane is quite proud to have her in his room. He says it is "ours" room. It is much easier to get him down too. He knows he has to lay down and be quiet. She goes down about 8:30 and I put him down around 9.

Hearing Results

Can you hear me now

Cayla had her second hearing screening yesterday. The test gave the same result as the last time. Her left ear has little to no response. The machine gave a "refer" result to the audiologist. That means we have to go back on the 29th and do a more in depth test. The ABR is done while the infant is asleep. Cayla will go in and they will put electrodes on her head and then I have to get her to go to sleep. They don't want to sedate her so I get to make her sleep. While she is sleeping the audiologist will put a thing (don't you love the technical term) in her ear that will produce noise as the audiologist monitors the brain response. I think the test will start loud and get softer but it could start soft and get louder I am not sure. Her brain response will tell us if she has mild, moderate, severe or profound hearing loss. They will try to meausre the response in both ears if she will stay asleep. After that test, I am guessing that they will wait until after surgery to do anything. Then I think they will re-do the test at some point after surgery. I am hopeful that the surgery will fix that problem as well. Once again we are in a wait and see pattern.

On a more fun note...tomorrow we are going to a mommy baby get together with the girls from water aerobics. Two of us stuck it out all last winter with our instructor (who was also pregnant) and then in the spring new people started coming. It is amazing the bond you form with people you see twice a week as you excercise in the pool. In the winter we really bonded because it was only three of us. Jennifer and I try to get our babies together once a month to just chat. It will be so much fun to see the other babies and moms. Now I just have to decide on a finger food to take. If the babies were older I would just take cheerios!

Check up

4 month checkup

Cayla had her four month check up yesterday complete with shots. Yuck!! I am glad that we can vaccinate against diseases, but boy is it hard on a mom to hold the baby while they do it. Luckily yesterday Cayla calmed down pretty quickly after the shots. Her siren can go off and keep going when she is mad. I was relieved that it didn't happen yesterday.

She weighed 12 lbs 12 oz (9th percentile) and only measured 24 inches (I put in 25 and that is inteh 65 percentile) yesterday. I am going to venture a guess that she is closer to 25. Her head circumference had grown which was good. It is up to 37.5 centimeters or 14.8 inches (still only in the less than 3rd percentile). The pediatrician was pleased with her growth and said that it was good for her age. He also cleared us to try fruit. So today she will get her first bite of the good stuff.

He talked to me about the risks of surgery. He said the main concern is bleeding and that she may have to get 3 blood transfusions during the surgery. He also said that they don't really do direct donor blood donations anymore. So I can donate or not. I think I may not. But if she needs lots of blood during surgery, I might. I guess that tatoo I wanted to get will have to wait a little longer. We also discussed her hearing. He said he saw nothing in her ear to make the test invalid. So I guess I will just have to see what Thursday brings.

4 weeks from today I will go to Lubbock for pre-op. The last two weeks have certainly flown by. I bet the next 4 do too.

Exodus 4:11

Hearing Test and Stats

Length: 25 in
Weight: 12 lbs 10 oz
Head circumference: 15 in
Age: 4 months
Head measurement front to back: 6 inches on the right and 7.5 on the left

Last week in Lubbock they did the weight, lenghth, head circumference thing. Then John's mom and I measured front to back two different times. We could not belive there is an inch and a half difference. It doesn't look like it in the photos or in person. That was startling for us. Then I plugged her stats into a growth chart calculator and her head circumference is less than 3%.

Today she had her hearing screening. Her right ear was fine, but her left ear showed little to no response. The audiologist said there is some wax in her ear that could be part of the problem. So we are retesting on the 17th. Right now I feel pretty sure that the test didn't lie, and that there is hearing loss. Maybe fixing her head will fix that too. At least she can hear out of her right ear so she is not totally deaf.

Her four month photos are pretty funny. She wasn't sure about the cereal and it got messy. The Melissa missed the smiles every time. It was like Cayla knew when the camera was about to take and she would stop smiling just in time. Melissa and I laughed so hard.

Cayla is sweet and is really cooing all the time now. She has been more fussy at night recently. I think it might be teething time. Melissa thought she could feel something, but I can't and I really don't see white spots. I guess the peditrician will tell me his opinion next week.

Cayla's 4-Month-Old Pictures

Cayla was 4 months old on August 4. She had cereal for the first time and it was captured on film. We will have her stats for you soon. This post also includes a pic of mom and Cayla, so that I can post it on the profile page (crazy Blogger rules) and also some pics of her condition. You can see the slope of her forehead in one picture and the bulge in her forehead in the other.

Exodus 4:11

Comments

Sorry for the confusion on comments. I was reading comments and noticed that I had selected registered users only. I have changed that and now the blog will allow anonymous comments.

Thanks again for the prayers and support.

Exodus 4:11

Trip to Lubbock Update

Carol, John's mom, and I took Cayla to Lubbock yesterday for a 3D CT Scan and MRI. We left around 6:15 am and I had not slept much the night before so it was a long day.

We drove straight to the oral maxillofacial doctor's office. He is a doctor of dental surgery. He took a long time explaining the procedure to us and answering questions. He said the main reason to have the surgery is to preven problems in the future. Even though Cayla doesn't look bad now it could become worse. Her brain is growing but is molding her head in an awkward way because of the premature closing of the right suture. It would only get worse in time. He also said one reason she doesn't turn her head, but only uses her eyes is because she can see a lot out of the bulging eye. The pressure created on her brain by the closing of the suture could create eye problems also. We asked if this could be genetic and he said there is a chance. John has a small head and has an enlarged optic nerve, so we are thinking and the doctor agreed that he could have had a milder version of this same thing.

So the procedure will be to make a jagged cut from ear to ear across the top of her head. They will peel the skin back and remove the front part of her skull. The doctors will then basically flip it over and put it back in the opposite way. Then her brain will help mold it back into symmetry. They will also manually do some shaping. Then they will use some poly propolene? stuff to build up the eye socket. It is like dissolving stiches but is more sturdy and pliable. After a few years it will totally reabsorb and there will be no traces of it. Any scars will be hidden under her hair. Basically then over time the brain will reshape as it is supposed to. They will also leave some gaps for brain growth. Very scary stuff, but very cool that they figured it all out.

The second doctor was the neurosurgeon. He and the oral guy both said we work as a team and our goal is to make perfect children. Then he said they would call with the results of the scans and that he mainly did them to make sure he has good maps of her head for surgery. He also has to do his own tests to confirm the diagnosis, even though he already had done so. Then they scheduled surgery for Sept. 13. Two days after Zane turns 4. We did that so that if John comes he can be here for both things. We will go on the 12th and have an hour long session learning about the surgery and post op procedures. We will do pre-op stuff on the 12th also.

Then we left and went across to the hopital. I thought we would just check in and they would send us away to wait for the scan time. But they went ahead and took us up to a short stay room. Cayla got fussy, but her "siren" didn't go off. That is her scream that sounds like she is being killed. I knew then that people were praying for her. Carol pushed the stroller down the hall and got her to sleep. They brought Cayla a tiny hospital gown and then started her iv. I left the room for that. Carol had to hold the baby while they did the iv. She said Cayla did well until the iv wasn't working properly and then they had to twist it in her baby arm. That is when she screamed. But after they left Carol held her and we got her to go back to sleep. They came to get us about 1:30 and I got to hold sleeping Cayla as they wheeled the gurney down to radiology. The nurse asked questions and then we had to wait for the radiologist to sign off on the paperwork. So of course Cayla woke up. She was hungry! We had forced her to eat at 9:15 or so, but she didn't really want it and spit a lot out. I had a hard time getting her calmed down, but still no siren. They gave her a test dose of medicine while I held her and she really didn't quiet down. So we put her on the MRI table and one nurse held a pacifier in her mouth and the other administered the medicine. They pushed the full dose and Cayla still wouldn't quiet down. Finally about 10 minutes later she went to sleep. They put some oxygen on her and started the MRI. I got to stay in the room for it, very cool. Boy is that machine loud. They finished that and we went to do the CT scan. The nurse was hoping to give her more medicine just before that test, but Cayla had already had the max dose. So we just prayed she would stay asleep, and she did.

They took us back to the room about 4:00 and we had to wait for Cayla to wake up. She stirred a little here and there, but didn't wake fully until about 5:30. As she was waking up her oxygen level dropped and the machine went off. She was happy and moving, but the alarm kept sounding. Finally the nurse changed leads and sensors and got a real reading. Then her pulse rate was high so the alarm went off again. But the nurse pulled the iv and I nursed the baby and all was well. We left the hospital around 6:15 pm.

Carol and I stopped to eat and called John. He was not talkative and didn't know if he could come for surgery. We did not speak long. I have asked his mom to tell him there is no pressure for him to come. He can come or not it is his decision.

We got back about 10:30 last night. Cayla woke up about 9:30 and Carol gave her a bottle. Then when we got home she took more bottle. She went to sleep around 11:30 and slept until 3:30. She nursed until about 4 and went back to sleep. She woke up at 7:30 and just talked to herself in the bassinet until about 9:00. She was very happy today and not at all upset.

Thanks for all the prayers. I will post shorter updates here periodically. Please feel free to add comments, you can do so anonymously if you don't have a blogger account.