Pictures

My new shades.

I don't want anymore.

Happy boy

Hello Daddy.

Playing.

Eating a puff in my new chair.

Getting Sleepy in my play area.

This is what I like to do with my spoon while I'm eating.

Trying to eat my baseball bat cookie.

Awesome cookies that Grandma's friend made for me.

GI Update and Visitors

Nicholas had an appointment with the GI doctor yesterday. He wasn't concerned that he pulled out his feeding tube since he is getting enough by mouth. He is drinking 15-20 ounces of EleCare and eating 3-4 jars of baby food a day. He is actually eating better since he pulled the tube out. We are to continue with the EleCare and same meds for 2 months then will go back for a checkup. He might let us try something besides the EleCare at that time and will do an ultrasound to check on his gallstone. I hope we can discontinue the EleCare in a few months. It smells horrible and he doesn't like it. We have been adding strawberry syrup to it and I ordered some flavor packs to try. It is also really expensive and not covered by insurance. I'm going to try to order it on Ebay and save a little. He had his last home nursing visit for a weight check. He has gained weight each visit and was 18 pounds on her scale. He was 17 lb. 7 oz at the GI so it is hard to get is actual weight on all these different scales. He is gaining so that is all that really matters. He had PT and OT this week and did great in both. He has been pulling his head up a lot like he is trying to pull up into a sit. Hopefully he will be sitting up soon. Grandma and Grandpa have been visiting from Chicago and Aunt Heather and Uncle John will be here for a visit this weekend. I have a lot of pictures to load onto the computer and will post them soon.

March for Babies

http://ecards.marchforbabies.org/VJ96JB

We are walking in the March for Babies to raise money for the March of Dimes. In 1985 the March of Dimes funded research leading to the use of surfactant to treat respiratory distress syndrome(RDS). Without receiving surfactant shortly after birth Nicholas' lungs would not have developed and he wouldn't be with us today. If you are in Columbia please join our team and walk with us on Saturday April 24. If you can't join the walk, please consider making a donation to the March of Dimes so they can continue to save premature babies like Nicholas. Here is a link to our walk page. http://www.marchforbabies.org/teamnicholas

Children's Hospital

We had a much better experience with the children's hospital this time. I think we are also just used to it by now too. I want to highlight some of the nice things about the hospital this past visit. Nicholas spent the majority of the second half of his six week stay on the cancer and blood disorders floor. The infant and toddler floor was full when he was being moved so he went to the 5th floor. We really liked this floor. It was a lot quieter and peaceful. The nurses were great and really showed a love for their job and patients. Nicholas was a big flirt with his nurses too.

The hospital has a program called Happy Wheels that comes every Monday. http://www.happywheelscolumbia.org/ They give each child in the hospital a free toy or book each week during their visit. Nicholas got a big box of Clipos, a toy giraffe, and three books. He also got three blankets from Child Life.

There is a music therapist who would always try to come in. We finally told her he can't hear but she wanted to come in and play the guitar for his feet. Nicholas loved it and she let us borrow a guitar for the rest of his visit. He can feel the vibrations and really enjoys it. Daddy is on the hunt for a good cheap guitar now.

PT, OT, and SLP came by to work with him a little and they let us borrow a Feeder Chair. It was a chair that he could use and not have to lay in bed all day. He eventually learned how to get his head out and try to escape it.

The last week he was there it was the Children's Miracle Network Radiothan and Richie the Raccoon, the hospital mascot, came to visit. There was also a concert by Edwin McCain on the CBD floor. Nicholas got to meet his first celebrity! He missed the animal therapy day because he was discharged.

Yesterday he had his 15 month well visit. His pediatrician is very happy with him considering everything he has been through. She wants him to go to a dentist soon, that should be fun, and said to try a baking soda toothpaste. It probably won't get rid of his brown teeth but we will try anything. He was up to 17.5 pounds and 28 inches. He was down to 16 pounds in the hospital so he is gaining weight back. She said we can us scar cream on his head to see if it helps his multiple scars. We have to follow the GI doctor on what to feed him right now and he has an appointment with him next week. He had physical therapy today and did great. His therapist doesn't think he regressed and showed better head control and weight bearing on his legs. She is also going to see if she can get us a feeder chair paid for by insurance.

He is Home!

After 6 weeks in the hospital Nicholas is finally home.

5 shunt revisions
1 Externalization
1 Broviac
1 Port
1 GI scope
Diagnosed with EE
Found a gallstone
3 new medications
Temporary feeding tube
And no cochlear implant

He has done so well eating by mouth today that we haven't had to tube any feedings. A home health nurse is available to put the feeding tube back in if he pulls it out and she will also flush his port once a month. Friday he gets his last Synagis shot and his sutures removed. Monday he has his 15 month well visit with the pediatrician, only a month late. PT, OT, and speech will start again next week.

Great Progress Today

Yesterday wasn't a very good day for Nicholas. The GI doctor wanted to keep him on a continuous feed and have us try to feed him by mouth. He didn't want to eat by mouth and threw up four times. It didn't make much sense to me to have him constantly fed and try to eat on top of that. He always had a full stomach so I don't blame him for not eating. Today they switched to having us try feeding him by mouth then put the rest in his feeding tube. He has done so well today. He has taken a little more than half by mouth and no vomiting. The bad thing about this is that we have to feed him every three hours around the clock, even when he is sleeping. This is how he was fed in the NICU. Hopefully he will go home tomorrow. He will probably still have the feeding tube but it shouldn't be needed for long. He also has a diaper rash or yeast infection. This new formula gives him nasty dirty diapers and has irritated him. They ordered some cream that will take care of both yeast and diaper rash. He was supposed to get his cochlear implant today. Now only four more months to wait.

Eosinophilic Esophagitis

The results of the biopsy they did during Nicholas' GI scope came back on Thursday. He has
Eosinophilic Esophagitis. Eosinophilic Esophagitis, also known as EE is an important disorder of the swallowing tube (esophagus) that is different from Gastroesophageal Reflux Disease (GERD). EE is an inflammatory condition of the esophagus that is characterized by having above normal amounts of eosinophils in the esophagus. A high number of eosinophils indicates a food allergy. The GI doctor started him on Elecare which is an amino acid based formula that is easy to digest. He has been only tube fed since Friday to give his esophagus time to rest and heal. Tomorrow we are going to try to feed him by mouth and see if he will take a bottle and not vomit. We can also introduce one baby food for him to eat for three days to see if we can figure out what he has an allergy to. The biopsy also showed microscopic holes in his esophagus. He was started on Carafate for that. He had his last dose of antibiotics from his shunt revision today so he should be able to go home soon. He might go home with a feeding tube if he still won't take a bottle. We will have to learn how to insert the tube but that is better than staying in the hospital any longer. Blogger isn't letting me upload any pics right now.

2nd Shunt

The full GI on Friday showed everything is normal. He continued to not eat over the weekend. They placed a TP tube on Friday to feed him. A TP tube goes down his nose, past his stomach, and into his small intestine. Peds switched him from the preemie formula which has 22 calories an ounce to Pediasure which has 30.

Since he still wouldn't eat and we exhausted all GI tests his neurosurgeon decided to try the 4th ventricle shunt again. He had surgery today. He has two shunts working off one valve. The valve is programmable but the ventricles should balance themselves out since the CSF can flow freely from ventricle to ventricle. His neurosurgeon also surgically cleaned up the incision from a few weeks ago. The incision that came open when he had the huge swelling and started leaking didn't heal like it should have. He cut away around it to get rid of any bacteria that could have entered. Nicholas has 4 big bandages on his head so we don't know what anything looks like. We can try feeding him when he is ready but there are no guarantees that he will eat. We are prepared to get a G-Tube if he needs it but have our fingers crossed that he will eat.