Memorial Weekend

Sorry for a delayed update, setting up the home is quite a task! We are starting to get the routine down...it has mostly been difficult on me...most of you know I don't follow any sort of schedule...in any kind of timely matter...but I have a dry erase board that keeps me on track! Our daily routing also includes a walk to pick up big brother from school. It is a two mile walk...Garrett thinks we have gone green but really mommy just needs the exercise and fresh air...the environment is just bonus! Well...Nicolas is doing great...Believe it or not our little
Nico is 9lbs 5oz! We have an appointment to see 2 Riley doctors on June 3rd. We are really looking forward to this...one doctor has already begun treatment...raised the amount of his Zantac and his feeds. His is still having spasms that are fairly painful...so we are very anxious for answers.
As for this weekend...we are keeping it low key! We worked on our landscaping...installed a video monitor if Nicolas' room...bought a baby swing. We are planning to go to Grandpa's lake house on Monday. We hope you all enjoy your weekend!

We will keep you posted!
Love
Felisa

HOME SWEET HOME!

Nicolas has been discharged from Parkview and is home. We are so thankful and very excited. We will still be making an appointment with a GI specialist soon on how to treat his spasms.

With that we would like to remind everyone wanting to visit us, that he is at risk of infections, pneumonia and SIDS, so 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, our responsibility is to keep our little precious gift from God protected, so if you or your children are sick you will need to visit us at a later time.

Thanks for being so understanding and thanks for all of your prayers and your continued prayers.

Much Love & Gratitude,
Jake & Felisa Stein

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

Nicolas is 8 pounds!!!!

My New Bunny

I love my bunny!
Susan Vlk made it for me!
My mommy calls him Mr. Knuffles.

Thank you Susan!
I love you,
Nicolas

Good News!

Nicolas had his central line taken out! He is no longer on IV fluids. It was mentioned by one of the neonatologists that if he continues to put on weight we may be going home this weekend or early next week. His feeds are up to 70ml on 24 calorie per ounce Progestimil. We are waiting to talk to a Nutritionist to see if he is getting the maximum amount he needs to grow. Dr. Badder (our geneticist) said all tests are in and all is well with Nicolas. Dr. Smith (the surgeon) said "the plumbing works" and everything looks great for him to be released. HOWEVER, Nicolas is still having spasms...but we have calls out to Anna's doctors and today Nicolas began taking Prilosec...we will wait and see if this helps. It sounds like we will be released regardless of the weather or not the spasms are present. Keep praying! We need it!

Mommy & Me time...

Nicolas Loves His Nurse!

Nicolas has been under great care with all the nurses at Parkview...

Our favorite Nurse is Aunt Renell!

Belly Bong

This is how my parents feed me...

Listen for Jack's voice...

We caught Jack singing to Nicolas, "Rock a Bye Baby".

Swallow Study results...

Well...we found out that little Nicolas is still aspirating. Because of this, we will not be able to begin oral feeds. The Speech therapist said we will try the Swallow Study again in a month. That does not mean he will be unable to leave the NICU...it just means we will continue to feed Nicolas via his g-tube. We also found out that he is not refluxing...the surgery was a success! AND the last thing we found out..."the plumbing works"...his bowels are working just fine. Good news!

On an interesting note...I want to thank my sister again for creating this blog...she didn't know it at the time but because of this she has helped us in our efforts to find a cure for lil' Nicolas. After reading the blog, Anna, one of Jake's co-workers contacted us and informed us that she went through something very similar with her daughter. Anna has given us great hope! Our doctors plan to contact her daughter's doctors to discuss symptoms and treatment options for Nicolas. This may or may not be the answer...but we are hopeful! Thank you Kimra for helping us to connect with Anna...And thank you Anna for helping us and Lil' Nicolas. I'm sure God had His hand in this too! Through Him all things are possible! If anything, it feels good knowing that Nicolas is NOT alone in his symptoms and we will continue our efforts to find a cure!

I'll keep you posted on whats to come!
Felisa

Scheduled Swallow Study

Finally...
Nicolas is scheduled for a swallow study tomorrow morning at 8:30am. This will be his last big test at Parkview. Please pray for his doctors during this time.

Nicolas' History...

Here is a little history on Nicolas's health and what they have been dealing with...

April, 21, 2008
We went to the hospital 3 Mondays ago because Nicolas' pediatrician wanted to have some tests run and also thought he saw Nicolas have a seizure during an office visit...Once on the peds floor at Parkview North we began to see a Ped's Neurologist, a Geneticist, Speech Therapist, Ped's ENT...And the testing began...Nicolas has had an MRI, EEG, CT scan, Echo-Cardiogram, 5 days of drawing the maximum blood amounts for testing, Upper GI barium study and a swallow study...As of that Friday he was NOT having seizures and everything had comeback negative (meaning everything was fine with our little Nicolas) EXCEPT....the last of those...during the Upper GI study and swallow study they found out that food was coming back up after going down and entering his lungs...which we initially thought would be fixed with a little Zantac and another med used to strengthen that muscle around the tummy and esophagus...but after visiting with a Pediatric Surgeon Friday night he informed us that we needed to have surgery on his little tummy and put in a feeding tube...Aspirating is very serious...apparently there is an increased chance for infection, pneumonia, and SIDS...He explained that we needed to be back in the NICU so that Nicolas can be put on monitors and watched very closely! We were pretty shocked when we heard all of this and 2 days later our 7 week 5 day old baby was in surgery for 2 hours. Since then he has recovered nicely and our tube feed are up to 2 ounces every 3 hours! And in a weeks time he has put on 1lb!!!! Something he has not been able to do since birth! As of last night he weighs 7 lb. 12 oz.!! We are so excited! I never dreamed that I would be feeding my baby through a tube in his belly...time will tell how long he is to have this feeding tube BUT until it is out know it is a pretty amazing feeling to know I am feeding him ALL the nutrients he needs and he WILL grow! He is such a happy baby and we love him dearly! I can't wait for you to meet him!


Date: Sunday, April 27, 2008
We had a bit of a rough week...Nicolas had a bad Wednesday and is still recovering from something....the jury is still out on what that "something" was...he went back on IV fats and proteins AND they took away tube feeds for the first 24 hours...now we are gradually increasing tube feeds and he is up to an ounce every three hours...initially he lost weight but now we are back to gaining...Recently they found out that Nicolas was low on an Amino Acid SO that has prompted them add a supplement to his food every 8 hours and to do more blood work...we will find out about mid week what some of the test results are and go from there...

He looks much better than he did 4 days ago...he was given some antibiotics and that has seemed to help! Thank goodness!

It looks like we are going to be here another couple of weeks! This latest issue for Nicolas has really sparked a desire in our Dr.s to get some answers for baby Nicolas...there are 9 Dr.s that are currently working together and doing everything they can...please pray for them...

Your thoughts and prayers are still needed...and greatly appreciated!
Love Always,
Felisa

Date: Mon, 28 Apr 2008
As it turns out Nicolas had a form of influenza last week...he is getting better...He still has some congestion, runny nose, and tiny bit of a cough...BUT his color looks great, strength is coming back, and weight is back up!

We just met with the geneticist tonight and we are still waiting for several tests to return...She is still uncertain as to what may be causing the spasms...

A new day...

Dear Family & Friends,

For the past several days Nicolas has had to put up with a nasty rash on his poor little bottom. This is probably a result to all the antibiotics he has been on...but it has been very irritating to him. We are leaving it open to air during the day and using his prescription strength "magic butt cream" during the night. Besides his bottom, he also has been gassy lately (he is definitely his father's son) SO between the two he has moments of being a little cranky...Right now, he is sleeping peaceful in his bed while listening to some classical music. He loves his music...it really is soothing to him! The neonatologists have begun to ween him off of the IV of TPN (proteins, fats, and electrolytes) because Nicolas is now "belly-bonging" 55 ml! He is still gaining... We are anxious to do the Swallow Study...that is when Nicolas will have to drink barium and they will do flash x-rays and follow the barium through the digestive system...From that we will learn how effective his swallow is, if he is not aspirating, if he is able to begin oral feeds, if he is still refluxing, and how well his stomach and intestines aid in digestion. That was a test ordered today but we have not yet been notified of a scheduled time. This is the last test for Nicolas here at Parkview North. There are a few specialists at IU Medical Center that our group of doctors thought may be beneficial for us to see...we are not certain yet if that is necessary and if it is, when that visit will take place. In order to leave the NICU Nicolas must have had his Swallow Study, be up to full feeds, off IVs, and shown consistent weight gain. Each and every day Nicolas continues to get bigger and grow stronger...considering his struggle...it is beautifully amazing to watch! He is more alert and awake during the day and sleeps more peacefully. We continue to pray that God gives our doctors and nurses wisdom and that he puts his healing hands upon Nicolas!

Love to all,
Felisa