Thursday, March 28, 2013

Failed Hearing Test

I took Jack to the ENT today. They examined him and agreed that he has a submucous cleft palate. Then they did a check to see if he had fluid in his ears. He did not. Then they did a hearing test and he failed it. Completely failed, no response.

I was hoping that the failed hearing test was due to fluid in his ears from the cleft palate. Apparently that is not the case. You can have cleft palate and be deaf and it is looking more and more that that is the case with Jack.

We have to go for another hearing test on April 15th. That is an ABR hearing test. They can see if his auditory nerve is working and where the problem is that is causing him not to hear.

I am overwhelmed by this to say the least.

Friday, March 22, 2013


We are going to tons of doctors. Right after I got home from the pediatrician I started calling and making appointments.  I called all the people he referred me to. I also called NYU's cleft palate center and made an appointment there.  Everyone said I have to be wrong because there is no way the NICU could have missed that.  He was there 106 days. He was intubated numerous times. He had feeding tubes placed many times.  Seriously, they were down his throat a lot.

On Tuesday I went to the cardiologist.  Jack had an echocardiogram and an EKG. We met the cardiologist and she was really great. Jack's PDA is closed.  She said he was cleared for cardiology and doesn't need to come back. Before we left she introduced us to the pulmonologist.  I really liked her too.  We have an appointment with her next week.

On Thursday we had an appointment with the gastroenterologist. He was very nice. He told me to increase the cereal in Jack's formula to a full tablespoon per two ounces and he changed his Zantac dose. After that we drove to Manhattan to see the cleft palate specialist. His name is Dr. Staffenberg and he was really great. Jack does have a submucus cleft palate. I asked the doctor how it could be that the NICU didn't pick it up when Jack was there 106 days he just said, " I reserve judgement."

Cleft palate is a relatively common birth defect.  I am blown away that they missed this. It looks so obvious to me. He has a huge ridge running down the roof of his mouth where you can tell the bones  fuse. His type of cleft palate is covered by skin, but the doctor said the muscle is not closed in the back of his mouth ( the soft palate). You can't see a hole because the tissue is over it but it causes him problems.  This is why he couldn't feed, why he dribbled, why he refluxed and why he failed the hearing test.  Because the muscle is not together when he swallows it goes into his ears and dribbles out his mouth.

Dr. Staffenberg gave me the name of the cleft palate team coordinator do I can make an appointment to see the whole team.

So we will have a lot of doctors in our future and I am working on processing all this.

Thanks for all the good thoughts and prayers!

We Are Home!!

We are home from Arkansas! We flew down on Tuesday the 12th. Julianna, my friend Martha and I took off at about 11:30. We arrived in Little Rock at about 5 pm. We rented a car, went to the store to get a car seat and dome supplies and headed over to the hospital to see Jack. Julianna got to hold him and she was over the moon. We left the car seat there so they could do the car seat test and we headed to get something to eat. At that point it was 9:30 pm and we were exhausted.

The next day we went over to the hospital at about 7:30 am. They had not do e the car seat test over night like they were supposed to and the doctor still had not been in to officially discharge him. It took awhile but they finally started the 3 hour car seat test. This test is to make sure babies will not have trouble breathing in the car seat position.  He passed the test and then we had to wait for the doctor.

We  were really annoyed that they made us wait all day since we wanted to get on the road early. It wasn't all bad though because Tierney came to the hospital and we got to spend some time with her and take some pictures.

We pulled out of the hospital at 3:13 on 3/13/13. We decided to drive as long as we could even though we didn't get the early start we wanted

We drove about 350 miles the first day, about 500 the second and about 450 the last day. It was tiring but both kids were really great in the car.  I am so thankful to my friend Martha for coming.  I couldn't have done it without her!

Sunday night I was feeding Jack and noticed that his palate looked really strange. It looks like a cleft palate to me. It was 3 am when I saw it do there was nothing I could do but obsessively google.  I had an appointment with my pediatrician Monday morning.

When I got to the doctor I asked him if he could check his palate first since I was freaking about it. He checked it and his jaw dropped. I asked him if it was cleft and he said it is certainly not normal. He set me up with referrals for cardiology, pulmonology, ent, opthomolgy, neurology, urology, neonatology, audiology, early intervention and gastroenterology.  He forgot a psychologist for me.  LOL!

Monday, March 11, 2013

Getting Ready to Go to Arkansas

We are getting ready to go down to Arkansas tomorrow. We are going to fly down there and drive home with baby Jack!! Julianna is coming and my friend Martha was kind enough to offer to come too.

Jack has been doing really great and now weighs 7 pounds 15 ounces, a true chunky monkey. He is going to have to come home with a heart monitor. The NICU is trying to make a lot of appointments for him but I have a feeling I am going to have to cancel them all and make my own. They really have no idea about this area or who is on my plan. One of the nurses called to say she found an opthamologist near me, only 35 miles away. It turns out it was in Manhattan. I tried to explain to her that New York City is about an hour train ride from here or three hours by car. In Arkansas things are pretty different so they really don't get that. I need to find doctors who take my insurance and are close to me.

I finally have everything set up to fix the house damage from hurricane Sandy. The contractor is going to start the job while I am gone. He is going to rip the rest of the roof off and build an attic. It will be seven feet high in the middle. I can't wait since this house has a huge storage problem and I am sick of emptying all the buckets every time it rains. I was lucky to finally get someone who could do it since the damage in this area was so bad from the storm. Most of the houses south of me are still not fixed and uninhabited. There are still plenty of people on my block with no heat or electric. It will be years before this area gets back to normal, if it ever happens.

I am so happy that we are finally going to bring Jack home! I am hoping we will be home sometime Friday. We will get to Arkansas in the late afternoon Tuesday. When we get there we have to go to the store to get the car seat. We will bring the car seat to the hospital and Jack has to go through the car seat test to make sure his breathing is ok in that position. If all goes well with that (keep your fingers crossed) we will start the drive Wednesday morning. The whole trip is a little over 1300 miles. I am hoping we can do 500 the first day, then 400 and then 300. We are going to see how it goes.

Thanks everyone for all the good wishes!!!

Monday, March 4, 2013

Happy Due Date Jack!!

Today is Jack's due date. I spoke to the NICU nurse today. She said that Jack will probably go home soon. He has to come home on a monitor and on caffeine and Zantac. I have to try to rent a monitor and take the monitor training herein NY. It looks like I am going to have to drive down there to get him since they do not recommend putting him on a commercial flight.

Jack had his hearing test twice yesterday and he failed both times. I know he hears because he responds to loud noises, but I do not know how much he is hearing. He was on a number of medications that are considered ototoxic and that may have given him some hearing loss. As soon as he gets home I will take him to a specialist here for a more comprehensive test. If he does have hearing loss I need to start addressing that immediately so he doesn't have big delays.

I got home about 1 am last night. Julianna was at my next door neighbor's house and she was not feeling well. This morning she had a very high fever and was vomiting so I took her to the doctor. They cultured her throat and nose and said they think whatever she has is viral. So we are home today. She is sleeping right now.

I have to start planning to get Jack home. It is about 1300 miles away. That will be a pretty long round trip. I have a lot of things to do before I can leave, such as plan out where ERs are, get the monitor, formula, etc, etc. It is exciting to see the light at the end of the tunnel!!!

Saturday, March 2, 2013

Eating From the Bottle

I had to leave Jack. It was very sad for me. I am missing Julianna too. I am currently in Atlanta, Georgia taking a prep course so I can pass my nursing clinical test. I am challenging the nursing program through Excelsior college. In the past few months I have successfully completed all the courses via home study and then going to a testing site to test out. I have completed 58 credits in the last 5 months. The last hurdle is the clinical exam. That is a 3 day test with a laboratory component as well as patient care scenarios. I want to be very prepared for that test so I am taking this CPNE workshop. It is a 3 day course and is very intense. I am missing my children tremendously.

I decided to do this now because I realize it will be close to impossible one Jack comes home. I decided to go for my nursing degree because there have been a lot of threats about privatizing my job. If that happens I will not have a decent way to support my children so I decided to make a personal plan B and get my nursing degree.

Julianna is having fun but she misses me and I miss her. I miss Jack too. It is pretty hard to have him so far away.

Jack pulled out his TPT ( trans pyloric tube) that feeds him into the intestine. That is a good thing because it has forced them to feed him with a bottle. He has been doing a lot better than expected eating that way. I am hoping the doctors are wrong and he will be home soon. I refuse to believe their negativity.

My neighbors found a guy who gave a reasonable estimate to fix the damage to my home. It has been 5 months since hurricane Sandy and we are not even close to back to normal. It would be really great if it could be fixed before Jack came home.

So all in all things are looking up. I will be home late tomorrow night. I can't wait to see Julianna and I can't wait to get things ready at home for Jack.

Thanks to everyone for all the good thoughts and thanks to Colleen, Lori and Bobby and Cathy for watching Julianna and Smudge. LOVE, LOVE,LOVE to everyone!!!