Pictures

Here are some pictures of our family.

Julianna and Jack Valentine's Day

Valentine's Day

Jack - March 2014

Julianna and Jack March 2014

 St. Patrick's Day 2014

Julianna and Jack - St. Patrick's Day 2014

Julianna turns 6

Happy 6th Birthday Julianna

This is how Jack's ear looked right before he lost the implant. It went from normal to this in less than 48 hours.

This is how swollen the whole implant was looking.

Jack's ear. Just before the implant came out.

Julianna lost her first tooth.

Setbacks

One of Jack's cochlear implants had to be removed. I have heard this phrase many times, "well, it is a very rare complication but......."
I noticed that Jack's left cochlear implant was looking a little more prominent. I was attributing it to his plagiocephaly (abnormally shaped head) but I was watching it. All of a sudden it was looking very swollen. I called NYU a number of times and they kept saying that they would get back to me. They never did. Then the incision line starting looking extremely infected. I took pictures of it all and emailed it to the nurse practitioner and the surgeon. The nurse practitioner emailed me back and said they should be able to see Jack in a few days.
I knew it was pretty bad and I was pretty worried that Jack was going to get septic or meningitis. He did not have a fever and he was acting fine but I was getting frustrated and made an appointment with my pediatrician so he could at least get antibiotics. Finally the surgeon called me back. He had seen the pictures and he said to get Jack into NYU and he would get him on IV antibiotics and operate in him to clean the infection out. He hadn't seen the email because he was getting ready for three surgeries that morning.
My friend Cathy said she would take care of Julianna and we went into NYU. They are pretty efficient there. They got him on the antibiotic pretty quickly. Dr. Roland came to see Jack in between his surgical cases. Jack went into the operating room at about 5:30 pm after Dr. Roland did three cochlear implant surgeries.
He came out to see me after the surgery and said he was unable to save the implant. He said it was very rare for it to get infected over two months after the surgery but it does happen sometimes. He said we can so another implant in about three months. The cultured the infection and it was a staph infection.
Jack had great difficulty during the surgery. His oxygen saturation went down to 72. They stopped everything, gave him breathing treatments and were able to get his breathing back to normal. His poor lungs have taken such a beating.
We stayed at NYU overnight and came home the next day. We saw Dr, Roland the next week and then the week after when he removed the stitches. We scheduled his next surgery for May.
It is pretty frustrating having setbacks. I sometimes feel like Jack can't catch a break. He is a happy guy though. He was clapping hands on his way into the operating room and was laughing and happy pretty quickly after his surgery.

Jack Had RSV, Pretty Scary

I picked Jack up at daycare on Thursday and his teacher said he was very tired and didn't want his bottle. I took one look at him and realized it was because his breathing was so bad. I gave him two treatments and my friend Maddy drove to the hospital with me, Julianna and Jack in the back. She dropped me and Jack off and was kind enough to keep Julianna overnight for me.

 Jack's O2 saturation was 88 but quickly dropped to the low 80's. They gave him 5 treatments back to back, IV steroids and admitted him. He still had nasal flaring and retractions and his wheezing was really bad. They were pretty worried because he did not seem to be responding to treatment but he finally started to. He had breathing treatments every three hours for a little over two days. They cultured him and he was positive for RSV.

 On the third day when the pulmonology fellow saw him she said there was no way he could be discharged. When I saw Jack's pulmonologist she said she would discharge him provided I slept next to him (I do anyway to hear his breathing, not in same bed), gave him treatments every four hours, gave him the oral steroids, take him back to pediatrician and pulmonologist and come back to the ER at the slightest sign of any problem. Of course I have no problem with those things.
 What is RSV and why is it such a big deal in preemies?
RSV 101: What Every NICU Parent Needs to Know For most infants, respiratory syncytial (sin-SISH-uhl) virus (RSV) causes an illness like a common cold in the upper and lower respiratory tracts. But some babies, including those born preterm and those with special health care needs, may be at high risk for a severe infection which can cause pneumonia or bronchiolitis, inflammation of the small airways in the lung. These conditions can lead to serious complications, re-hospitalization and in some cases, death. According to the Institute of Allergy and Infectious Diseases, 75,000 to 125,000 children in the United States are admitted to the hospital for RSV infections each year. Fortunately, education about the virus and prevention steps can help you reduce your child’s risk.
Is Your Baby or Young Child at Risk?
A preemie may appear healthy, yet still have injured lungs. Chronic Lung Disease (CLD) is the result of a baby’s lungs getting irritated or inflamed. Babies may need a machine called a ventilator to help them breathe. Pressure from a ventilator can sometimes irritate the fragile lungs of these babies, which can cause CLD. CLD may also develop in babies who have received high levels of oxygen for a long time or have had pneumonia. Because their lungs are not normal and may still be healing, babies with CLD are at increased risk for severe RSV disease.
  How Early Was Your Preemie?
If your baby was born at 28 weeks or earlier…Your baby may not have received all the virus-fighting substances, called antibodies, from mom. Also, babies born at 28 weeks may have small, underdeveloped, and narrow airways for breathing. This puts them at high risk for severe RSV disease.
If your baby was born at 29-31 weeks…A bad lung infection can cause clogged airways and serious breathing problems that might lead to hospitalization.
If your baby was born at 32-35 weeks…and is 6 months or younger at the start of RSV season, he or she is considered to be at high risk for severe RSV disease.
If your baby was born at 36 weeks or later…Most full-term babies get a mild form of RSV disease. Symptoms and Diagnosis
An RSV infection usually causes moderate-to-severe cold symptoms in the upper and/or lower respiratory tract. In young infants, the symptoms may be less obvious. According to the American Lung Association, “In very young infants, the only symptoms may be irritability, decreased activity, and breathing difficulties.”
Coughing, sneezing or wheezing that does not stop Stuffy or runny nose Fast breathing or gasping for breath Spread-out nostrils and/or a caved-in chest when trying to breathe A bluish color around the mouth or fingernails A fever (in infants under 3 months of age, a fever greater than 100.4°F rectal is a cause for concern) Mild sore throat Lower appetite Trouble sleeping For diagnosis, your baby’s physician may test a nasal swab for evidence of the virus. A chest X-ray and/or oxygen saturation test may also be done to check for lung congestion.
 Treatment As with many viruses, once the diagnosis is confirmed treatment is limited to managing symptoms. Less severe cases may receive medicine to reduce fever or medicine delivered via a nebulizer, which converts medicine to an easily-inhaled mist to assist the lungs during an infection. Fluids are often recommended especially for young children and infants to prevent dehydration. A bulb syringe can be used to suction mucus from nasal airways in infants. If your child has severe form of RSV, he or she may need to be hospitalized and treated with oxygen, have mucus suctioned from the airways or be placed on a ventilator to assist with breathing. Often hospitalization lasts a few days with most children recovering within one to two weeks.
Prevention RSV spreads just like a common-cold virus. According to the CDC, “people infected with RSV are usually contagious for 3 to 8 days. However, some infants and people with weakened immune systems can be contagious for as long as 4 weeks.” Because contracting RSV does not give protection from future infections, your child can get RSV multiple times—even during a single season. The first infection is usually the most severe with subsequent infections generally having milder symptoms. Taking a few extra precautions around your family and friends can help protect your baby and young child during RSV season.
Wash your hands thoroughly before touching your baby, and ask others to do the same. Cover your coughs or sneezes and show siblings how to practice good hygiene. Don’t let anyone smoke in your home or near your baby or child. Wash your baby’s toys, clothes and bedding often. Don’t share eating utensils and cups with one another. Consider regularly disinfecting high-traffic hard surfaces such as door knobs. Keep your baby away or limit exposure to crowds, young children and anyone with colds. Talk to your pediatrician about palivizumab (Synagis®) shots during RSV season. Preventative Injections Palivizumab (Synagis®) is the only FDA-approved medication to help protect high-risk babies from severe RSV disease. Even though it is given as a shot by your healthcare provider, it’s not a vaccine because it works differently. Each shot, which is given monthly during RSV season, provides a dose of virus-fighting substances called antibodies that help prevent severe RSV disease from infecting your baby’s lungs.
“RSV is one viral illness that actually can be prevented with adequate prophylaxis,” said Dr. Sarmistha B. Hauger, Director, Pediatric Infectious Disease, ‘Specially For Children, Dell Children’s Medical Center. “Babies who fit into the high risk criteria and are born at the time that RSV may be circulating in a community should be identified quickly, and begun on a regimen of monthly injections of palivizumab (Synagis®). This antibody is extremely effectiveat preventing serious illness secondary to RSV,” she said.
Preemies are often born before getting enough antibodies from their mothers to help fight RSV and other viruses. Preemies are also at greater risk for severe RSV disease because their lungs are less developed and their airways are narrower than those of full-term babies. Synagis® helps preemies by providing more infection-fighting antibodies to help protect their vulnerable lungs from RSV. The shots are effective for about a month, which why it′s important to get every single shot on schedule during RSV season.
   Jack was approved for the Synagis vaccine and he does get it. He did not get it in December due to complications from his cochlear implant surgery. He did get the shot right before we left the hospital.
He is a sweet little guy and all the nurses loved his little smile. He has been doing a lot better the last few days. The pediatrician was happy about how he sounded but he still needs multiple breathing treatments each day and he is still on the oral and inhaled steroids. It seems like it is always crazy around here.

Jack's Cochlear Implants Are Activated!

It was a tough few weeks after the surgery. Jack had projectile vomiting, heavy bleeding from both ears and pretty serious balance issues. They said the vomiting and the balance issues are from the trauma to the middle ear. The bleeding seemed much heavier than it would be for the average cochlear implant patient because Jack has ear tubes so blood and fluid were readily able to drain out.
He still has slight balance issues but it has gotten much better. He can sit again now and he is not falling over anymore. I am pretty happy about that because we had so much therapy to get him to be able to sit so I was worried that we had lost it all, but he is getting it back again.
We set off for NYU for the activation with a pretty big blizzard on its way. I called to try to change the appointment but I would have had to wait 6 weeks and I didn't want to do that. We were supposed to have an appointment on Thursday and then another on Friday. They said they could squeeze it all in so that we could skip the Friday appointment.
We took the train in and they saw us pretty quickly. They showed me how to work the equipment. There is a lot to know. They showed me how to test it, assemble it, put it into the dehumidifier unit each night, change the volume, change the program set up, put it on his head, clip it on or use the harness, etc, etc. Finally we put it all on him and he responded to sound. I videotaped it but they told me I was not allowed to post it publicly.
They made all different kinds of noises to measure his responses. I think it was a bit overwhelming for him. Really I just wanted to say "hi Jack!! Mommy loves you!!!". I know he wouldn't understand it but I would have liked it to be just us.
They had two giant boxes of equipment for me and a big bag. I took the train and had the stroller. We packed what we could into the stroller and I left the rest for out next appointment which is on Friday January 10th. She packed up the processors for me to put in my backpack and then told me to be careful of them because they are worth over $20,000. And to think I was worried about someone stealing my ipad in the train station!
I walked back to the Penn Station and made it home before the blizzard started. Both Jack and I were tired and we all went to bed pretty early.
Julianna had no school today due to the snow. I put the processors on Jack and was able to talk to him here in our house with no one else. It was great. I videotaped a very short amount of it.
I have been told that, if hearing is a computer, Jack now has the hardware. The therapy he will receive over the next 3 - 5 years will give him the software. He really has to learn to hear with the implants. Right now he is being assaulted by the sound a bit. We all learn to tune out extraneous sound. For instance, we don't hear lights buzzing or routine traffic noise because we have learned to tune it out. We do that from birth. Jack has not learned how to do that because he hasn't heard since shortly after birth. So he has to learn how to tune out noise and how to make meaning from the sound. Also, Jack is hearing electronically and that is not how we normally hear. Most of the kids who get cochlear implants as early as Jack did do very well. They tend to be mainstreamed and attend regular school as early as kindergarten. I don't plan to tell Jack that he has any type of disability, just that he might have to work a little harder than most kids, so I am hoping he will excel. He is also going to have a lot of therapy to help him along.
Thanks for all the help and prayers!!! Here is Jack hearing! It is short but sweet!

Some Bumps In Jack's Road

Jack has started to feel a bit better and the bleeding from his ears has almost stopped. I did notice another problem though. His balance is completely off. He has been falling over to his left side. I had him sitting on the floor. He is really good at sitting unassisted, or at least he was. He can't even get enough balance to sit for a few seconds. He just tilts to the left and goes over. I had him in the bath ring, couldn't do it. In the exersaucer he sat in the seat bit had to hold on to an attached toy to keep from falling over.
I looked it up and it says that balance can be affected by the cochlear implant surgery, especially if both sides are implanted at once. I did call the doctor's office and I am waiting for a call back. We have a follow up appointment on Friday.
I am really hoping that this is just a temporary thing and that there was not some kind of damage done to his vestibular system. I am thinking that it could be that it is super swollen in there or that his ear tube on that side is clogged.
Jack is going through everything with his ears and at the same time his two front teeth are breaking through. I feel like this little guy can't catch a break. I have been staying home with him but I am hoping to go back to work tomorrow. We shall see.

Jack Is Getting Through It

Jack is going through a tough time. His ears are draining tons of bloody drainage. It is freaking Julianna out. It occurred to me that she is not likely to follow in my career footsteps. LOL.
Dr. Roland told me that Jack's head may swell considerably. He said it may swell so much that his ears may stick out. Well, that is what is happening. His ears are sticking out about as far as they possibly can. That really started last night as the swelling progressed. He has also vomited a few times, but his appetite does not seem to have diminished.
He has been having trouble sleeping and it seems like he can't get comfortable. His only pain meds are tylenol and advil. He still does seem to be pretty smiley when he sees me or Julianna.
They told me that most kids go back to their regular activities after about a week. It has only been a few days but right now I can't see how this will all have cleared up in a few more days. Maybe, but it seems unlikely to me.
We have been stuck in the house for a few days and it is starting to get a bit old. It snowed today so it was unlikely we would go out and do much anyway. If he is feeling better tomorrow we will try to go do something, even if it is just to go to the grocery store.
I am hoping that his swelling will go down soon and he will start to feel better. We are supposed to have his cochlear implants activated the first week of January. I am hoping all the swelling will be gone by then. :)

Surgery Over - Jack Is A Tough Little Guy

The surgery is over and we are home. Jack did great!!
I dropped Julianna off at my friend's house at 5 am. I then went to pick up my friend Cathy who was kind enough to accompany me to NYU for Jack's surgery. We parked at about 6:15 and made it to the sign in area by 6:30, just when we were supposed to be there.
All the paperwork went smoothly. Each doctor came in to speak to me before the procedure. I explained Jack's lung issues to the anesthesiologist. She said she would get some extra things set up in case he had any problems. Dr. Roland came in and he told us it should take about 2 1/2 hours in the operating room. He said the actual procedure would be about 45 minutes per ear.
Almost exactly 2 1/2 hours later Dr. Roland came out to speak to me. He said Jack did well, but he did have some breathing issues during the surgery. His oxygen saturation dropped significantly at one point and the anesthesiologist gave him an albuterol treatment. He responded positively to that and they were able to keep going. They did not have trouble extubating him.
I saw him in recovery pretty quickly. He had some blow by oxygen but he was still sleeping. He had a huge bandage on his head. When he starting waking up we gave him a small bottle of water, then diluted juice and finally formula. He was obviously in pain and they wanted to give him fentanyl. I asked if we could try him on tylenol first. They finally agreed and he fell asleep shortly after the tylenol.
We left NYU a little before 2 pm. I made it home in time for the school bus. Julianna was happy to see me and Jack but she was also pretty happy that my frind's college age daughter would be taking her to ice skating. She also took her to school in the morning and helped her with the kindergarten Christmas project, a milk carton and graham cracker gingerbread house. I was supposed to go with her but I could not because of Jack's surgery. They were allowed to bring another special person if a parent couldn't go. I was a little worried about not attending this, but she seemed to have a great time.
Jack had a bit of a restless night. He had significant bleeding and his bandage was soaked through by the morning. Dr. Roland told me to expect this. He also said Jack would have a lot of bloody drainage because he has the tubes in his ears and they allow more drainage out. I took the bandage off this morning (as directed) and I was amazed to see that the incision lines are barely noticeable. They are behind his ears and there are no sutures. Dr. Roland told me he was closing it all from behind and there would only be two absorbing stitches. I am not sure how they do this, but it is pretty amazing. His head does look a little swollen. His body does not look too swollen today, but it did yesterday. They gave him some steroids just before the surgery (for his lungs) and that made him pretty puffy.
I am glad the surgery is over. We will be going for activation in the beginning of January. Thanks for all the good thoughts, prayer and assistance!!!