Nathan Shepherd

Born: March 15, 2006  

The Shepherd Family Homepages
 

1/14/08

Nathan had his palate repaired in June. He had a rough time breathing afterwards but as always he fought through it. Since his repair it has been a struggle getting him to eat orally. In July we began tube feeding Nathan Pediasure instead of formula. He seemed to tolerate it well. Nathan developed a cough and I noticed him refluxing more. We began to increase his meds. He began to throw up. He was losing weight. It had got to the point where we would put him in his chair to feed him (which would take about 40 minutes) then we would have to leave him sitting there for about an hour afterwards because if we moved him he would throw up.

All this seemed to start when we started the Pediasure so in October we switched him to Peptamen Junior. It seemed good for a few weeks but then he started throwing up again. On Nov. 12, I walked into the room and found Nathan white as a sheet of paper with blue lips. He was shaking his head from side to side trying to get a breath. I moved him around and he was totally out at this point so I gave him rescue breaths and finally got him breathing again. A week later we had an appointment with the GI doctor. They scheduled him for an EGD (stomach scope) for December 27. On December 10, Nathan threw up and immediately quit breathing. I did the usual moving him and beating on his back. I got him to throw up again but still no breathing. When I tried a rescue breath I could hear it hit fluid and make a gurgle noise. I began to panic. I listened to his chest and heard rumbling. I tried another breath then went to get the phone to call 911. I told her everything and finally came to my senses and went to find the bulb syringe. It took a lot of time and suctioning for him to finally take a breath. It was the longest he had ever been out. When the ambulance arrived they put him on oxygen and transported him to the hospital. He was running a temp, had an ear infection, and bilateral pneumonia. He stayed in the hospital for two nights. Because of the pneumonia they had to postpone the EGD. It is now scheduled for January 17. Hopefully we can fix his stomach issue. "Nathan makes us laugh every day with his little personality. He will definitely let us know if we aren't doing what he wants us to or if he wants us to pay more attention to him! And if he doesn't want you talking to him he can ignore you like you aren't even there. Everyone can't help but fall in love with him, especially when he gives you that big grin!"

He can pretty much roll and scoot to get where he wants. When the Christmas tree was up he would get over underneath it and pull a strand of beads off to play with. Just this past week he has started prop sitting on his own for about 20 seconds. He is such a happy child when his belly is not hurting him. He loves for his Daddy to toss him in the air. We are so proud of him!

Amanda
adeanshep@yahoo.com

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Update 4-25-07
Nathan had some trouble with seizures but we finally got them under control. He had a wonderful 1st Birthday. He was hospitalized on April 11 with a viral infection in his lungs and ear infections. He is doing much better. He got his glasses and absolutely loves them! He is now exploring a whole new world that he did not know was out there. He smiles and laughs all the time. Keep him in your prayers for his next surgery (palate repair) scheduled for June 14.
Amanda

Update 12/6/06
Our little flower continues to blossom and bring us much joy.  It is amazing to watch him grow and learn.  He now weighs in at 16 pounds and seems to be getting stronger every day.  Nathan has been diagnosed with myclonic seizures and is now on medication.  On November 17 he had a definitive lip repair done and his skin tag removed.  The surgery went well and he looks so good.  We are looking forward to celebrating his 1st Christmas!
Amanda

Update 9-1-06
On August 1 Nathan had his g-tube put in.  Two days after we got home I Nathan threw up and the next morning his stomach was swollen.  We took him to the doctor who sent us to get an x-ray and they called and said he had air in his abdomen that they were going to fly him to Arkansas Children's Hospital.  They were having storms so we rode in the ambulance.  They said it was pneumoperitoneum (free air in the abdomen outside of the intestines).  We stayed for two nights.  On August 25 Nathan had his second surgery.  He had a lip adhesion, his tongue released, and tubes put in one ear.  The were unable to put tubes in the left ear because he has no space in the middle ear.  They also did an MRI on his brain and it came back as underdeveloped corpus callosum, which is what we already knew from the CT scan.  His next surgery will be in November for a definitive lip repair.

Update 7-28-06
Nathan will have his first surgery on August 1 to put in a G-tube.  His second surgery will be August 25.  They will fix his lip and put tubes in his ears.  They are also going to do an MRI of his brain will he is out.  We saw the ophthalmologist and he said that along with the coloboma in his left eye he also has a small white spot on the cornea and he is nearsighted in that eye.  Nathan now weighs 11 pounds and 2 ounces.  

Amanda

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My name is Amanda and my husband is Daniel.  We live in Alma, Arkansas.  I gave birth to Nathan Andrew on March 15, 2006. He was born 3 weeks early and weighed 6lbs 15oz.  We did not know anything was wrong until he was born with a cleft lip and palate.  He was diagnosed a week later with full Trisomy 13.

We have found out so far that Nathan has partial agenesis of the corpus collosum, coloboma in the left eye, cleft lip/palate, ASD, and a small polydactyl on his left hand.  He is on medicine for reflux.  He holds his breath and turns purple/red and a few times I have had to give him rescue breaths to get him breathing again.  His episodes have seem to gotten less frequent.  We are dealing with ear infections right now.  We are scheduled to see an ENT specialist, a neurologist, and a surgeon.  

Nathan is doing good.  He now weighs about 9lbs.  He rolled from his belly-back and back-belly by 2 1/2 months old.  He also smiles at us.

We couldn't decide on a name.  My husband liked Jacob.  About a month and a half before he was born I decided to go with Jacob and my husband said he wasn't sure about it any more.  We started the search again.  I said Nathan and he liked it so we finally had a name.  The name was perfect because it means "A Gift From God".

Amanda Shepherd
adeanshep@yahoo.com

Update 6/23/06

Nathan hasn't been eating because of his ear infections and had actually lost weight. We went to our Children's hospital to see the ENT doctor.   We had a tube put down his throat and what he doesn't eat we are putting down the tube.  Now that he is getting full and is over his ear infections he is a happy baby again.  He had gained 10 ounces last week.  We went to see the cardiologist and she cleared him for surgery.  He has a small ASD but it is causing no strain on his heart.  We go back to see her in 2 years.  We have a few more appointments before he has his first surgery.  We are hoping to have it done in August sometime.  He will have tubes put in his ears, his nose and lip fixed, his tied tongue snipped, his polydactyl removed, and a G-tube put in.