Slow Day

Nicholas had a good slow day today. They didn't make any changes on him so he is just resting comfortably. He got a bath and that is about it. He is being a good boy right now and needs to keep it up.

Better Day

Nicholas had a better day today. They weaned his ventilator setting down to 10 breaths per minute. This is the lowest setting they go before the extubate. They put in his orders that if he self extubates (pulls the tube out on his own because he likes to pull on it) to put him on Nasal IMV.

His cultures haven't grown anything so no infection yet. Some bacterias can take up to 5 days to grow so he isn't in the clear yet.

They increased his feeds to 15ml an hour.

He looked comfortable and relaxed. Hopefully he will keep doing good and be off the vent in a few days.

Back on the NICU Roller Coaster

Nicholas was put back on the ventilator today. He was having a lot of spells last night and this morning where he was dropping his heart rate really low. His blood gases were also bad so they decided to put him on the vent. His nurse said it was like a sigh of relief from him when they put the tube in. He must have been really tired from breathing on his own. He is also getting bigger so more weight on his lungs means it harder to breath.

His C Reactive Protein levels were elevated when they did his labs. That is an indicator of inflammation and infection so they started him on antibiotics. They can also be high from stress. So hopefully he was really stressed from breathing on his own and having so many spells and he doesn't have an infection. They did a blood culture and a culture of the fluid from his head and are waiting on results.

His x-ray looked good so they are keeping him on full feeds. He looked more relaxed on the vent but it seemed like he wasn't happy with the tube down his throat. Hopefully he will be off of it soon.

Slow day

Nicholas had another good day. Nothing has really changed. They did remove his Broviac. They had to give him shots all around it to numb the area. Poor little guy, that really must have hurt. Hopefully he won't need a new one when he has surgery again. He was a messy boy today and went through 4 outfits!

Brain and Eyes

Nicholas had his brain ultrasound today. It showed that the ventricles are still dilated so they are increasing the amount of CSF they take out each day to 25cc. They want to give him some more time to grow and get stronger before they do the shunt. He will probably need a VA shunt which means there will be a catheter that connects a ventricle in his brain to an atrium in his heart where the CSF will drain. He can't have the most common VP shunt connecting to his abdomen because of scar tissue from his other surgeries.

His eyes have progressed to Stage 1, Zone 2 ROP. That means the blood vessels have started to grow and move outward. This is just from being born premature. ROP has 4 stages with 4 being the worst and needing surgery. The ROP can continue to progress, stay the same, or regress. They will do another exam in 2 weeks.

His feeds have stayed at 14.8ml an hour but they added more fortifier to increase his calories to 24 per ml.

They wrote orders to have his Broviac removed and that will probably be tomorrow when a surgeon is available.

Good Day

Nicholas had a slow day today. He is still at 4 liters and around 25% oxygen on the Vapotherm. His feeds are still at 14.8ml an hour. Mommy got to help give him his breathing treatment and held him for a while.

He has a pretty busy day tomorrow. He has a brain ultrasound and they might decide when they want to put the shunt in. He also has an eye exam. Pray for no ROP. Tomorrow is also his last day on Hydrocortizone.

Back in Clothes

Nicholas had another good day. Not much is going on. His feeds increased to 14.8ml an hour. He is tolerating them pretty well and has had only small residuals. They have him back in clothes to try to regulate his body temp on his own.

Back to Naked Baby

Getting bigger.

So much bigger than his bear now.

This was right before he turned his head all the way to the other side!

Nicholas had a pretty good day today. He is 11 weeks old and weighs 4 lb. 15 oz and is 17 1/4 inches long.

He is doing well on the Vapotherm but they want to get his flow down to 3-4 liters of oxygen per minute. The Vapotherm causes a lot of air buildup in the tummy so they want his flow to be lower, which will mean less air in his tummy, because of his past tummy problems.

He is still at full feeds and they added a baby multi-vitamin today.

He had a hard time regulating his body temperature so he is out of clothes and they have his bed set to keep his skin at a certain temperature. Once he gets his shunt and the the pressure on his brain is released, he should be able to regulate his temperature better. They are weaning him off the heated isolette already.

He has 2 hernias, which are very common in preemies, and they will fix those right before he goes home.

Big Day!

Nicholas did not like his breathing treatment at all!

Sucking on his paci.

No Nasal IMV!

Nicholas had a big day today. They decided to try him on Vapotherm. This gives him a high flow of oxygen through his nose but he isn't getting any breaths. So he is doing all the breathing himself just getting a big flow of air coming in. They have the IMV at his bedside still just in case he needs to go back on that.

He is up to 13.5ml an hour of milk which is full feeds! They discontinued his IV fluids so he is getting only milk. They weaned his hydrocortizone a little again. He also had a pacifier that he was sucking away on.

Mommy got to do Kangaroo Care for the first time today. He slobbered all over the tape holding his feeding tube in place so it came out and I got milk all over my chest. That's ok, they just put it back in and he was good to go. He was cold so I didn't get to kangaroo for long.

It was a very big day for him. He is on a better breathing machine and he is at full feeds. Please pray that he continues to move forward.

Dad speaks

Thank you all for your support, and visiting our page. You have no idea how much we appreciate the fact that people from all over the world are visiting our son. HE has been doing so well lately, that daddy has actually been sleeping at night, and was able to focus on his work. Nick has a ways to go yet, but Mama's milk is the key right now. My boy is wearing clothes now, eating, pooping and peeing. Also if you listen carefully, you can hear a squeak from when he trys to cry. You can't hear it totally due to the feeding tube in his throat.
I encourage everyone to keep visiting our son, and thank you so much for the support. Me, My wife, My Son, Thank You For all your support.

I know all parents say this about their kids, but I am more accurate than anyone. My son is hands down, by far the sweetest, and most beautiful baby out there. Anyone that disagrees, just know that I am right and you are wrong. HA Ha Ha Ha Ha Ha Ha. Keep the support coming, and when Nick comes home, everyone is invited to our house for a welcome home party. I will provide the Beer and Steaks!

Go Nick!

Nick For President in 2043!

Good News

Nicholas had a good day today. The EEG results showed no seizure activity so they discontinued the Phenobarbital. They increased his milk to 12.5ml an hour. He is down to 29 breaths per minute on his Nasal IMV. He is also receiving an inhaled steroid twice a day for his lungs. I held him today and he was actually awake!

I want to thank everyone for all the emails, messages, and comments we have been getting. I really enjoy reading them and it is such a nice feeling to know there are so many people following Nicholas' progress.

Big Boy!

I forgot the camera so this picture is from last Saturday.

Nicholas is up to 5 lb. 3 oz. What a chunky monkey! They are using his actual weight now and not an adjusted one any more. They increased his milk by another ml an hour so he is up to 11 per hour. He is tolerating it well. They also weaned a little more on his hydrocortizone. He had a bad blood gas over night so his IMV setting went up to 35 breaths per minute. The blood gases since the increase have been good.

Boring Day and Snow!

Nicholas had another good day today. He is just kind of hanging out right now- eating, sleeping and growing. They increased his milk by another ml an hour but that is the only change since yesterday.

On a side note, we had snow in South Carolina today. It didn't last long and there wasn't much but it snowed. Bella loved it and was running around like a wild woman.

Still Moving Along

All bundled up.

Daddy and Nicholas.

Nicholas had another good day today. They turned his IMV down to a rate of 25. They want to try to wean the amount of breaths he gets from the machine to encourage him to breath more on his own. He doesn't breath on his own when they take the IMV off of him to move him so he isn't quite ready for CPAP and still needs the reminder breaths he gets from the IMV.

They increased his milk to 9ml an hour and added a fortifier to it to give him more calories. They discontinued his lipids, fat, and his IV nutrients were replaced with a clear fluid with glucose.

He still has good urine output and stools. Mommy got to change her first poopy diaper today and got a lesson in diapering because he wasn't done going yet!

No More Naked Baby!

Look who's wearing clothes.

Nicholas is wearing clothes today. They want him to start regulating his temperature on his own rather than his isolette's temperature adjusting to his. He has on a preemie sleeper and it is too big. When I look at his clothes they look so tiny and that they would be too small for him but they aren't. His nurse was creative with his hat today and made it into a headband to use to attach the strap of his breathing machine. He looks like he is wearing little baby workout gear.

They are increasing his milk to 8 ml an hour and he has been tolerating his feeds well. He is about 3/4 of the way to full feeds. Mommy sucked it up and got up to do the middle of the night pumping to see if that helps with milk production. He is eating more than I make right now so my frozen supply will run out eventually.

His urine output is good and he had a very large stool according to his nurse. He is doing really well.

His room in the NICU was a very busy place today. A lot of the babies that were in there when Nick was born have graduated to less critical rooms and there are a lot of new micro preemies in there. It made me realize how far he has come. He has a new neighbor who was just born and is on the oscillator. That is all I could tell because they blocked it off. But the mother was coming back with different family members and had to pass me holding Nicholas each time. Seeing the look of sadness, fear, and jealousy as they passed me reminded me that just 10 short weeks ago that was us. I remember in the very beginning one of the nurses told us that they get one very critical baby and one that doesn't require a lot of attention. Nick is the one that doesn't' require a lot of attention. I noticed that his nurses have been with their other babies a lot more lately but it didn't dawn on me until today that Nicholas is their easy baby. The days of the "why us", and "what ifs" have been replaced with acceptance and each day is another miracle and one step closer to Nicholas going home. He still has a long way and another surgery to go but he has accomplished so much in 10 weeks and I am so proud of him.

Still cruising along

Nicholas is having another good day. He is still doing well on the Nasal IMV. His urine output was at 2.7 cc per kg per pound for the first 8 hours today. He is still losing weight from being so swollen and is down 30g from yesterday. His nurse gave him a washcloth bath today and got all the built up bedidine off his head. They are increasing his milk to 7ml an hour and he has been tolerating it well. Mommy got to hold him for a little while too.

Busy Day

Too bad his IMV tubes cover his eyes, they were open.

Nick and his pacifier.

Nicholas had a very busy day today but it was a good day. He had his second eye exam and his eyes still look good and show no signs of ROP. They will check again in 2 weeks and since this disease shows up as babies get older he still isn't out of the woods. He had an EEG on his brain to look for seizure activity. They did this because of the possible seizure that he had a while back. We will know the results in a few days after the neurologist checks it. They increased his feeds to 6 ml and hour. His urine output was at 2.4 cc per kg per hour so I am a little concerned about that. His last dose of Lasix was yesterday so I hope his output isn't decreasing. His IMV was set at 36 breaths per minute and 30% oxygen. His nurse said he was probably just warn out from everything today and needed a little more help breathing. I coudld see that it is starting to irate his nose because he had a little scab inside is nostril. And, Daddy got to hold him for an hour today.

Doing well on IMV

Much more comfortable on IMV

Nicholas had another good day. He is doing good on the IMV. He is at a rate of 30 breaths per minute and was around 28% oxygen today. He looked more comfortable with all the tubes and straps that are on his head and face today.

He has had good urine output and stools today. It is also his last day on Lasix. They took a long time to wean him off of it so hopefully he will continue to have good urine output without it.

His feeds were increased to 5ml an hour and he has been tolerating them well. They reduced his dose of hydrocortizone a little to.

He was doing so good that Mommy got to hold him for almost an hour today. He slept most of the time and didn't have any de-sats.

Nasal IMV

Kind of scary looking but this is a good thing. The strap around his head holds the tube in place and the strap under his chin is supposed to keep his mouth shut but he likes to keep it open.

Nicholas was extubated and put on Nasal IMV today, nasal intermittent mandatory ventilation. This is a step up from the ventilator. It still is giving him breaths per minute but it is less invasive because the breaths go in through the nose rather than through a tube down his throat. They decided to extubate him while he is still on the steroids because they thought he would have a better chance of doing well on it. He had a blood gas while he was on it and it looked good. Keep your fingers crossed that he doesn't have to be reintubated.

His urine output was at 5 cc per kg per hour so far today, which is good. I thought his face looked swollen so his Lasix reduction might be starting to effect him.

They also increased his feeds again today to 4ml an hour. He has had a small residual but overall is tolerating them well.

Extubated!

Nicholas was extubated today and is off the ventilator! He is on nasal IMV- Nasal Intermittent Mandatory Ventilation. I will update more after I visit him.

Big Day for Mama!

Look who's awake.

Nicholas is still doing well. I was able to hold him for about 5 minutes while the nurses were changing his isolette. He was wide awake before but zonked out as soon as I held him. Then he woke up again when he was back in his bed. I hope he continues to improve so we can hold him longer.

They increased his feeds to 3ml per hour.

His ventilator setting are good. He is on a rate of 20 breaths per minute and was at 21% oxygen. He will desat when he is getting his assessment and need more oxygen but goes right back down once he is settled.

His urine output is still good and they are weaning the Lasix to once a day. Cross you fingers he still pees!

His brain ultrasound showed the ventricles were larger than last time so they are increasing the amount taken out each day to 15ml and will reassess next week.

He was measured last night and is up to17 inches. He has grown 4 inches since he was born! They are still using an estimated weight of 4 pounds because they think he still has some extra fluid.

He has an eye exam scheduled for Friday. Pray that his eyes still look good and are free of ROP. Another good day. Keep it up Nicholas!

Very Stable

Sleeping peacefully.

Nicholas is having another good day. He is very stable on the ventilator at 25 breaths per minute and at 21% oxygen. 21% is room air or what we breathe. He still has good urine output, stools, and blood pressure. They are weaning him off the hydrocortizone now so he is getting a dose every 12 hours instead of every 8. They also doubled his feeds today so he is getting 2ml of milk an hour. This is what we need him to do now, sleep and eat.

Goodbye Oscillator!

Still so tiny.

So comfy.

Nicholas had a wonderful day today. He was taken off the oscillator and moved to the conventional ventilator this morning. His blood gases have been good and he has been stable on it all day. He is still off the dopamine and his blood pressure is good. It doesn't need to be checked every hour anymore since it isn't low so he doesn't have to constantly wear the blood pressure cuff. I'm sure he is happy that is finally off of him. He continues to have good urine output and no residuals from his feeds. They are planning on weaning him off of the hydrocortizone next and might increase his milk by a tiny bit tomorrow. He looked so comfy with the flexible ventilator tubes and all bundled up in his snugly. I hope we never see the oscillator again!

9 Weeks Old Today

Nicholas is having another good day. His urine output is still great so they stopped the Dopamine. They will see how his output is and if he continues to have a good amount they will keep him off of it. He is still getting Lasix every 12 hours. His feeds are the same, 1 cc per hour. He is still on the oscillator but hopefully he is moving in the right direction and will be taken off of it soon. It seems like they are doing things slowly this time to avoid pushing him and causing him to swell up again. He still has some swelling but it is mostly the upper part of his body and you can really see it in his face. It is amazing to me that he still has extra fluid even though he has been peeing like a champ.

Boring Day

Still a little swollen

Tummy time

Nicholas is the same today as he was yesterday. He is still getting 1 cc per hour of breast milk. His urine output for day shift was 5.2 cc per hour per kg. He still has extra fluid around his torso. He looks like he has grown a lot too while he was swollen. It has been almost 4 weeks since he wasn't swollen so we really didn't get to see him grow. They haven't weighed him either because they can't get a correct weight with the excess fluid but they are using 1700 grams which is 3.7 pounds as his estimated weight. He is still on the renal dose of Dopamine and the Lasix every 12 hours. His night nurse flipped him onto his tummy last night and he was snoozing away while I was there.

Dad's inspirational motivation

There was a speed skater named Dan Jansen. He was a speed skater that always fell short. He would take one step forward and ten steps back; always when it came to competing. He would either wipe out or just fall short of winning. Throughout the 94 Winter Olympics, he was criticized and mocked for even trying to compete. ESPN constantly bashed him, Saturday Night Live made insulting skits about him, hell even CNN made fun of him.

On his first two runs in the 94 Olympics, he did what the world expected. Dan Jansen wiped out twice.

In the 92 Olympics his sister passed away as he was in Calgary. He still competed, and still wiped out. He was given the Olympic Spirit Award. An award given to athletes who compete through diversity.

In his last run that he would ever do in the winter Olympics ever again. Dan Jansen lined up at the starting line, praying he just did not wipe out and just finish. When the gun went off, Dan zipped out of the gate, and was skating at mind blowing speed. He finished shattering the 1000 meter world record, came in first, and landed the Gold Medal.

Wow! That has been my motivation whenever life throws me a curve ball. I am passing that on to my son. Nick is my little Dan Jansen. Through all of his adversity, and tragedy, he is still not giving up. He refuses to listen to the Doctors' worst case scenarios, and continues to move forward. Even when I lost hope, he never did. He gives me hope every time I see him move his arms and legs, every time he opens his eyes. He is going to make it people.

I want my son to come home, grow up, and become strong enough to where he can go back to the hospital and find all the doctors and show them how much he has overcome. Nick is doing great. He just needs to keep it up. NICK RULES!!!

Double the Milk

Peek A Boo, I see you.

This is what I call the beached whale position.

I can't wait until he is off the oscillator and can have some tummy time.

Nicholas had a good day today. He was tolerating 1/2 cc an hour of milk so well they increased his feeds to 1 cc an hour. He had a tiny residual this morning but has digested the rest. What a good boy! He also had 2 poops so things are moving alone. He sure has been a pooping machine these past few days.

His urine output is still excellent. He was at 7.2 cc per kg per hour during the day shift today. He is still on a renal level of the Dopamine and they changed his dose of Lasix to every 12 hours rather than every 8. He looks about the same as yesterday and his skin is starting to look saggy. He still has more to lose but he has to be close to getting it all out.

His oscillator settings have been good but they want him to get rid of all the fluid before they move him to the ventilator.

Dr. Amarnath is hoping that this weekend or by Monday he will get rid of the edema and will be off the Dopamine, Lasix, steroids and oscillator. They don't want to push him so everything will happen on Nicholas time.

Yummy Milk

Getting smaller.

Snoozing to Baby Einstein.

Nicholas had a good day today. He has been on a continuous drip of half a cc of milk an hour since yesterday afternoon and has been digesting it. His night nurse told me early this morning he had a small residual but his day nurse said she didn't find any when she did his assessments during the day. Woo hoo! This is great news. Hopefully he will continue to digest it and increase the amount he can tolerate. And that also means the surgery was a success.

He also had good urine output. He was taken off of Dopamine last night and his output slowed down so they put him back on it at a level of 5. This is what they call the renal dose and it helps the kidneys. He is still on a dose of Laxis every 8 hours. His output for the last 24 hours was 5.6 cc per kg per hour. He still has some edema, swelling, but if he keeps peeing at this rate it should be gone soon and he looks so much better. It is hard to remember how small he really is since he has been swollen for 3 weeks. He will be a little guy again soon.

He is still on the oscillator but the settings and his oxygen level are good. They want to keep him on it until the edema is gone. They think it will be easier for him to adjust to the regular ventilator without having the extra fluid. He was switched back to the vent the day before we had our big scare so I have no problem waiting.

Everyone cross your fingers that he continues down this path and doesn't scare us again.