Doctors and More Doctors.

Jack and I have been trecking all over to see all different types of doctors. On Monday we went into Manhattan to go to NYU for the feeding specialist. We got there pretty early. We went into the office and began to wait. This is the office for reconstructive plastic surgery. Sitting there and seeing some of these kids made me profoundly grateful.

There was a little girl who came in with her parents. She had what I would describe as "elf like" features, trach, feeding tube, and it appeared that the plastic surgeons were making ears for her. She was running around and playing. When I took Jack out to feed him she came over to see him. I asked her how old she was and she said she was 4. I asked her if she liked princesses and she told me she liked them all but Rapunzel was her favorite. Underneath what I can only describe as a truly shocking appearance is a little girl just like any other little girl. There were other kids there with horrific deformities. It made me realize how lucky we are and how unfair life can be. If you are ever feeling sorry for yourself I suggest going and sitting in a waiting room for reconstructive plastic surgery. You will leave there feeling like you won the lottery, because in a lot of ways you did.

The feeding specialist never made the appointment. I waited for an hour and a half. Finally the receptionist got in touch with her and she said she thought the appointment was for the next day. She also offered to reimburse me for gas and tolls, which makes me think she did know she actually missed the appointment, but I declined. I really don't think we need a feeding specialist at this point because Jack eats like a monster. However,  I did want to see this woman because she is the coordinator of the cleft palate team. We will have to go another time.

On Wednesday we went to the craniosacral therapist. She was very gentle with Jack and he slept through most of the appointment and it was an hour and a half. There were parts of it that I thought were a little hokey but I am trying to keep a very open mind. For instance, she was saying things like "Jack had a very traumatic experience in the NICU and we need to validate his feelings and have him release his stress and trauma". At certain times she said he will shudder a bit as he releases his trauma. He did do that numerous times, and I have never seen him do that at home, so who knows? She said she could help his breathing. He has  very loud nasal breathing. It has been that way since he got taken off the ventilator. She was rubbing his face and his temples. She said his bones are out of line and that is what is causing the nasal breathing. I don't know what she did, but all of a sudden he was breathing quietly. It was actually pretty amazing. She said that it might not stay that way and that he needs more treatment.

Jack also has torticollis, which is an abnormal position of the neck. It is likely from the weird positions he was in while being ventilated for so long. The craniosacral therapist is also a physical therapist and she feels she can help his torticollis too. We are going to go back next week and I am hoping that this will help him. If nothing else it relaxed him a lot and he slept great for the next few days.

Today we went to the pulmonologist. She feels like Jack is doing well and we can decrease his caffeine a bit more. She wants me to take him to someone to study his swallow to make sure his formula is not going anywhere it shouldn't due to the cleft palate. He does sometimes spit up and it comes out his nose, but I think a lot of babies do that. We will go back to the pulmonologist in two weeks.

All in all things are going well. Jack is an eating machine. He sleeps well most of the time. He sometimes has issues with gas and constipation and that causes him pain. I think the rice cereal adds to that but when we tried to stop it he vomited everything he ate. On Monday we have the ABR hearing test. I am very apprehensive about this test. I am hoping they will find that Jack's hearing issues are conductive rather than sensorineural, but I am not feeling super optimistic about it.

Thanks for all the good wishes!!

Pictures!!

Jack and Juianna with the Easter Bunny.

Tierney with Jack the day we left Arkansas.

Jack getting his EKG.

Julianna and Jack on his 4 month birthday. (three weeks adjusted)

Our house just before Sandy.

Our house after Sandy with the new attic. This is before the chimney was added.

Inside the new attic. You can see why the chimney had to be raised.

Jack lying down. You can see here how his head is elongated.

My cousin Ruby at St. Marks in Venice, Italy. She was lighting a candle for Jack's health and happiness. All these good wishes have pulled us through.

Pediatrician

Jack went to the pediatrician Wednesday. He gained 4 ounces but that is not as much as he should have gained. The gastroenterologist advised me to add 1 tablespoon of rice cereal to each 2 ounces of formula. The purpose of that is to thicken it so it is harder for him to spit it up. This is to combat his reflux. The problem with this is that the thick formula is very hard for him to suck through the nipple. The cleft palate people told me that his sucking through the nipple is the equivalent of an adult trying to suck through a straw with a large crack in it. She had told me that often cleft palate babies use more calories trying to eat than they are getting from the feed. This seems to be the case with Jack. He seems to be eating a lot even though it is hard for him and often frustrating for me. The pediatrician advised me to stop putting the cereal in his formula. I did that and he threw up everything he ate. Seriously, we went through eight outfits in one day. Thank God my cousin Eileen gave us some huge boxes of boy clothes her sons used. They are saving me right now!

Yesterday we went to the gastroenterologist. They weighed Jack and said he gained 11 ounces in 14 days. Huh?? I think the pediatrician had me in a different room than he did the first time and the scales are different.     The gastroenterologist only has one baby scale so I know it was the same one there. The gastroenterologist advised me to keep putting the cereal in his formula and he thinks he is doing fine. Relief!

In addition to all his other problems, Jack also has scaphocephaly. That is a head that appears flattened on the sides and somewhat elongated. This is common with babies that were premature and on ventilators because they have them lying on the side of their heads. The plastic surgeon I took Jack to for his cleft palate said it is concerning and needs to be watched. He said if it doesn't get better he will need carniofacial reconstruction. This freaks me out a lot. I was explaining all this to my sister Kathleen and she suggested that I try craniosacral therapy for Jack. Craniosacral therapists use gentle touch to manipulate the skull. I found a craniosacral therapist online that is near me and has extensive experience with pediatric patients. She is also a physical therapist. I called her and she said she really thinks she can help Jack with his head and also with his palate. Obviously she can't get the muscle in his soft palate to grow together, but she thinks she can do some things for his hard palate. That was really encouraging to hear. We are going on Wednesday. Of course it is not covered by my insurance because it is an alternative treatment, but if I we can avoid such an invasive surgery for Jack it will be worth any amount of money.

I am taking Jack to different types of doctors every day and we have a lot more to go. In the evenings I take Julianna to her activities. She has swimming on Monday, violin on Tuesday, ice skating on Wednesday, karate on Friday, reading and arts and crafts on Saturday and soccer on Sunday. In a few weeks t-ball starts and that will be two days a week, either Tuesday, Thursday or Saturday depending on the game schedule. Jack sleeps in the car seat and seems to have no problem coming along for the activities.

To top off all the chaos in this house we are finally getting the damage from hurricane Sandy fixed. I am thrilled about that because I have to run up stairs and change the buckets every time it rains. I also have a terrible storage problem in my house because I have no attic, no garage and no basement. We were storing things in boxes in the shed outside, but everything that was in there was lost when the Sandy water came. It was 3 - 4 feet high in my yard. So my solution to this problem was to build an attic. We lost the roof anyway, so why not?

The framer came and ripped everything off the house and had it finished in two days. We now have an attic that is seven feet high in the middle. We had to rip every piece of sheet rock and insulation out of the upstairs so it is now all studs. Eventually it will be nice and new. We are not going to rent anymore since I need the room. I know this will be great when it is finished but right now it is an added stress to an already stressful situation, I was hoping to get it all finished before Jack came home. It didn't happen because there were no contractors available. The guy I got lost all his trucks in the storm so he took a long time to be ready.

All in all we are doing ok, Thanks to everyone for the good wishes and prayers!!

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.

Doctors

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!

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!!!