Noah Nickerson

C-section on March 19th, 2009

Brazil - Gainesville, Floriday (FL) - full Trisomy 13 and a Dandy Walker Malformation

Update: 6-23-10

 Since our last post we have been on a whilrwind.  Noah got the RSV bug and became very sick in January of this year.  He spent 50 days in the ICU and was put on a ventilator for 3 weeks.  The doctors discovered during this time that he has a floppy airway. After failing his first extubation they told us that they did not think that he would be able to breathe on his own ever again but that he would need a traecheostomy and a ventilator to help keep his airways open.   Even though they were not optimistic they were willing to try to extubate one more time. 

We prayed very hard about the decision.  God reminded us of all the things that Noah was never supposed to be able to do, but through God´s grace he surpassed all expectations... so we decided to try and extubate one more time. 

 As soon as they removed the tube the second time Noah breathed easily and has not looked back since!   We have gotten a g-tube for Noah as his feeding took a turn for the worse after being in the ICU for so long. 

 He still has pleasure feeds every day but he gets most of his nutrition through the tube.  Since getting over his pneumonia Noah has made up for lost time and grown and developed at a tremendous rate.  His favorite toy is the cookie monster and he always calms down when we snuggle him up with it.  We got a special chair for him in May and he LOVES to sit in it. Even when he is super fussy, when we put him in his chair he calms right down.   We are currently visiting his grandmother in Brazil and he is getting extra hugs and kisses all day long.  He loves to sit with his Brazilian grandma and listen to her talk.  

Since Noah is blind we are still looking for new ways to stimulate him.  Touch is very important to him and we try to let him feel everything with his hands but even more importantly he likes to taste everything with his mouth!  He is also getting physical therapy 3 to 4 times a week which is a very stimulating experience as well.   Even though his feeding has become difficult he still has very good oral skills.  Just this last week  he has started making new sounds playing around a little bit with his tongue.  

We are still sturggling with UTIs as noah gets them quite regularly. We have just started him on prophalatic antibiotics to see if it can keep the infections at bay, when we return to the US we hope to find the reason for his recurrent UTIs.   He also may have a relapse of his infantile spasms.  He received treatment in December of 2009 and the hypsarrithymia in his EEG had gone away as had the spasms.  Unfortunately both symptoms returned with his last infection.  The spasmed have decreased with his last does of anti-biotics and we are hoping that the seizures will subside now that the infection is gone.  

 It is a wonderful experience getting to raise Noah even with all of the challenges. 

Please pray that God will continue to give us more good days than bad.   God Bless!

Gilianny Nickerson
giliannynickerson@hotmail.com

- -  - -

12-15-09

Hi, My name is Gilianny and I have a baby boy named Noah with full Trisomy 13 and a Dandy Walker Malformation. When I was pregnant around the fifth month of pregnancy we discovered that there was something wrong with my baby’s kidney’s and when I was in my eighth month we left Brazil and moved to Gainesville-FL to seek better treatment for him. In the beginning he was diagnosed with Meckel Gruber, which has 100% mortality rate. We were told that his kidneys were polycystic and that they should not be functioning in the womb and would not function outside of the womb. However, after my c-section on March 19 they discovered that his kidneys which had shown up polycystic on 5 separate ultrasounds were perfectly normal!

They did genetic testing and after almost 11 days he was diagnosed with FULL TRISOMY 13. While this was devastating to us, because the doctors told that he probability of survival was maybe one week, one month, maybe one year or he could be one a million and live a little longer... we still felt blessed by God because his original diagnosis was one devoid of any kind of hope that any other diagnoses seemed better. In that same day a great friend of ours share with us about this web site Living With Trisomy 13, and it was really good to see so many of these precious children living a happy life here on earth. We are really blessed to have little Noah in our lives. He is such a fighter and a strong example to us.

He has a cleft in his soft palate, extra digits (except on his right foot), rocker bottom feet , craniocinestosys (medium trigonocephaly), he is also blind but he definitely he can see light, he has infantile spasms which we are currently trying to treat………..He has no big problems with his heart, and has never had apnea.

He has a lot of difficulties in his feeding ……
After two weeks in the NICU, they sent us home. He had an NG tube and we were trying at the same time teach him how to use the bottle. In the very first night he pulled the tube out, and after few days he was using only the bottle. He started having a really bad reflux, and we started him on Zantac. A few times when he got real mad we noticed a hernia in his groin and on May 19, he had his first surgery. We struggled a lot to decide what was the best for him, we were concerned about anesthesia, apnea …But We decided trust in our Lord and Savior Jesus Christ.
He came through the surgery just fine without any effects from the anesthesia. Unfortunately he got a third degree burn in his bottom during the surgery. Two weeks later they decided that he needed a skin graft. I almost lost my mind, it seemed too much for him, and we didn’t know what to do.

We had the same concerns that we had in first surgery, plus they never told us what happened to cause the burn in the first surgery….One more time we placed our trust in God and asked Him to take care of Noah. During the surgery the surgeon saw that grafts were not necessary and instead was able to do skin flaps, which made the recovery much easier. Noah had to spend 3 days without food and without pressure on his bottom, which means we were not able to hold and console our baby for a lot of time. After 5 days, they sent us home and his feeding issues got worst, some of the stitches on his bottom opened up and we had a big open wound. We have to wash often and scrub and take off the scab. It was terrible see my baby crying and suffering. However, time did go by and he did get better. After 3 month we have only a big scar.

Noah is such a big trooper, he can communicate very well…Even in during the time that he was recovering from his burn he never lost weight.

During the process of healing his bottom we went to Brazil and spent almost 5 months there, it was really good to be able to show everybody our miracle boy.

Now we are in Florida (December 2009) and we are trying to figure out what is wrong with him, because He sometimes seems to be in a lot of pain and we don’t know why. We discovered recently that he has gall stones, he has an appointment with the GI clinic next week, and we hope find out why he is having trouble holding down more than 2 oz and why he throws up so much.

Noah is such a blessing in our lives. He has such a strong personality. He is very vocal about his needs and has no problem letting us know when he is not happy with something! He loves to chew on both hands, preferably both at the same time if possible. He has just recently started smiling and it lights up his whole face. He can airplane when we put him on his belly but he has to grunt when he does it. He loves kisses and hugs, and while he sleeps well in a crib he prefers to be rocked to sleep. He loves to music and always calms down when we put a cd on for him to listen to.

We thank God everyday for the blessing he has given us. Even though he is only nine months old he has already touched so many lives. I cannot count how many people pray for Noah on a daily basis, nor do I know how many people have heard and been encouraged by his story. I hope and pray that his story may be and encouragement for you as well.

Gilianny Nickerson
giliannynickerson@hotmail.com