As of last night Nicolas weighs 8 pounds 3 ounces! Tonight we are going to begin feeding Nicolas by using a pump system. This will be a continuous feed that will slowly pump food into Nicolas' stomach over a 4-6 hour period. This will maximize the amount of calories he takes in during the night, allow him to rest more and it will be easier on his little tummy. The doctors are going to monitor him over the next 2-3 days to make sure everything goes well during the night feeds. As far as our discharge goes, we don't know when yet...BUT it was discussed today that we will go home with monitors. Nicolas will need to be hooked up to them while he sleeps. We will also go home with suction (this is because he pools his own secretions in the back of his throat) and a pump (for night feeds only). We are beginning to make arrangements for all the equipment...and tomorrow night we will be given a 1 hour training course on how to use the monitors. Anyone who will watch Nicolas has to be part of this training. Once we are home Nicolas we will also receive weekly visits from a Speech Therapist, Occupational Therapist, and Physical Therapist...all from First Steps. We will also be making an appointment to see a Peds GI soon...we are not sure when or where that will take place yet! Hopefully he/she will have an insight as to how to treat Nicolas' spasms.
More Importantly...
We were informed today that because Nicolas is still aspirating we should not take him to any public place for 6 months. He is still at risk for infection, pneumonia, and SIDS. Also he should not visit with anyone who has any symptoms of a cold or the flu and hand washing is essential to reducing the risk. As much as we miss you and want to visit with all of you, if you or your children are sick you will need to visit us at a later time. We have to think of him first...naturally, as I'm sure you all understand. Our little Nicolas is precious and fragile...he will continue to get stronger but until he is we must protect him as well as we can.
Continue to pray for us!
Love Always,
Felisa
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If this is your first time reading our blog, here are a few things you may need to know...
This blog page is dedicated to informing our loved ones about our little Nicolas. It all began February 19th 2008. He was born a mere 6 lbs. 2 oz. and within 3 days dropped to 5 lbs. 8 oz. Initially Nicolas was diagnosed with Failure to Thrive and Reflux along with aspirating. He had a surgery at 7 weeks old to correct the reflux. They added a feeding tube at that time to prevent aspirating and improve weight gain as well. Once we checked out of Parkview North we began to see many specialists at Riley Children's Hospital in Indianapolis. After a few trips to Riley and several EEG's later he was diagnosed with Infantile Spasms...something he had been going through since 3 weeks old but was not diagnosed with until he was 6 months old. To try to rid Nicolas of these seizures, Jake and I gave him an inner muscular shot of a hormone steroid called ACTH. This medication dramatically improved his spasms to less than 1 a day. Before that, he would have 8-10 spasms a day. Due to the ACTH medication his immune system was affected and won't be back to normal until June of 2009. As of December 2008, Nicolas' MRI reported that he has a moderate thinning of the white matter that surrounds his brain which attributes to his delays in development. Doctors feel that all of Nicolas' symptoms are due to an underlying cause. Nicolas has gone through a great deal of tests in search of a cause and they have yet to determine what it is. Today Nicolas' weight and height are lining up with growth charts and his seizures are few. Through all of this, you wouldn't think anything has changed for our family. Not that this doesn't weigh heavy on us...it is challenging being patient with medical professionals and with a diagnosis. But through it all...we are so glad God gave him to us! We think he is incredible and love him dearly! With that I leave you this...read our blog so that you too can know more about Nicolas and our journey with him. Continue to pray for our family! Love, The Steins
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1 comment:
Jake and Felisa,
Continued thoughts, prayers, and energy sent your way...always.
Our love,
Mike, Shawn, Shelby, and Makenna
P.S. Mr. Knuffles is awesome!
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