Shrinking Baby

Smaller than yesterday
But still a chunk!

The orange tube is his feeding tube giving him yum yums.

Nicholas had a very good day today. His urine output was excellent. They are moving the Lasix to every 8 hours now instead of every 6. They also removed his catheter because he was peeing around it. He is still swollen but not as big as yesterday. He will probably we off the Dopamine tonight too since his blood pressure is good.

They started him on half a cc per hour of milk around 2pm. They are going to push on with the feeds unless a blockage shows up but so far his x-rays look good.

His oscillator settings were weaned down a little too but they still want him to get rid of more fluid before moving him to the ventilator.

His liver and kidney ultrasounds looked good. His brain ultrasound showed no change in the size of the ventricles so they are still going to take out 10ml a day.

Kind of a boring day for him, but we like boring days.

Milk stopped, pee started.

Nicholas didn't tolerate the feeds yesterday so they stopped them and will restart tomorrow. They said it is typical for it to take a few times before they start digesting. Nick's stomach has been empty his whole life and just needs to get used to the milk so hopefully in a few days the milk will digest. He will have an ultrasound of his abdomen tomorrow because they are concerned about his liver. He has jaundice of the liver but this is not the same jaundice that he had as a newborn. This one is caused by not eating. His x-rays still look good and he is still stooling so everything seems to be working.

He is still on a dose of Lasix every 6 hours and it seems to have started to work. His urine output increased over night and was good this morning and afternoon. He was also put back on the Dopamine this morning to increase his blood pressure to help his kidneys push the urine out.

Dr. Amarnath tapped his reservoir today and didn't get any fluid. This is a good thing. They will do an ultrasound of his brain tomorrow and determine how often they are going to tap his head.

His breathing has been stable. He is still on the oscillator and they will move him to the ventilator once he gets rid of all the excess fluid.

He is still very swollen but seems to be moving in the right direction. The main concern right now is the fluid and then feeding.

Milk

Very calm today.

Swollen but still cute.

Sleepy baby.


Nick doing opera.

Nicholas was 8 weeks old yesterday at 11:58pm.

The x-ray of Nicholas' stomach looked very good and the gas has moved along to where it should be. He also had 3 stools yesterday so they are starting him on a tiny bit of milk today. We will know about 4 hours after they give it to him if he can digest it.

He still isn't really peeing. His output has been about 1cc per hour per kg. A normal output is 2-4cc per hour per kg. They put him on a dose of Lasix(diuretic) every 6 hours instead of a continuous drip. We are waiting to see if it works and if it doesn't, he will have to go back on the drip. He is a little more swollen than yesterday.

His lung x-ray and blood gases have been good so they were able to wean him a little on the oscillator. He will probably be on the oscillator until he starts peeing and gets rid of excess fluid again.

Overall, the doctor said he is doing better and it has been a good week despite his poor urine output.

Need to Pee Again!

A little puffy again.

Nicholas needs to pick up the peeing again. He has been off all diuretics and his urine output is at the minimum amount allowed before he needs to be put back on them. He looks a little puffy again too. He did have a stool which is very good.

He was weaned down on the Dopamine again and is almost off of it. They were able to lower his oscillator settings a little too. His heart rate is good and his blood pressure was ok.

Another good day

Holding Mama's finger.

Surrounded by pillows.

Calming down crabby boy.

Nicholas had another good day today. He was weaned down on the Dopamine for his blood pressure because it has stayed up in the range they want it in. He still has to go down some more before they will stop it completely.

They stopped the Lasix, the diuretic, completely and his urine output has really slowed down. They may have to start it back up tonight or give him a different diuretic.

Dr. Marsh said that he wants to start feeds sooner than later. Nick will be 8 weeks old tomorrow and still has not eaten. They want him to be completely off the Dopamine before they feed him. His stomach x-ray looked good today and didn't show any blockages.

Nicholas was pretty cranky today and was crying a lot. His nurse said he had finally settled down and was sleeping when I called tonight.

Dad's Entry

Nick is looking up. Things are falling into place for the time being. He still has a long way to go, and no promise of being home bound yet. Corinne and I have been knocked down so many times, almost been counted out, but we still get up to take more. We do it because we know that Nick needs us to be positive, and upbeat every time we see him, no matter what may be going on with him at the time. That is the thing. Although Nick cannot function like a normal child at this time, he can still hear, see, and sense our emotions. I know when I look at him, he seems normal, and I want to pick him up, and take him home. But I know inside he is very ill. His organs are not functioning properly, and he is in pain. No matter what, I try my hardest to be happy and soft spoken when I see him. He needs that positive influence around him. He needs to know he is loved and there are people there on his side. He may not have gotten this far if we hadn't been doing the things we do. Nick is like being in an antique store. You have to be careful of everything you touch or do or you may break something, then you have to buy it.
Corinne and I know he is fighting. Corinne and I know he may not survive. We both know that he needs our love and support. He needs your love and support too.

Just as I tell my employees when they are having a bad day, or screw up. You have to be positive and not give up. If life were meant to be easy, we would have been given detailed guidelines.

I hope this is more positive than my last entry. It gets to me at times. Thank You All!

Making Progress

Nicholas says "Happy New Year!"
The NICU version of a Lazy Boy. Nick with his feet propped up.

Nick started the new year with a bang. A bang of pee! His 24 hour output was 17 times a normal urine output. He is still having a strong output and they want to see this for a few more days. Dr. Marsh said a baby his size should pee about one teaspoonful per hour. This afternoon while Mom and I were there, he was peeing about 15ml an hour. He is a lot less swollen but still has some more to lose. Grandma T says he doesn't look like a little Sumo Wrestler anymore. They weaned the Lasix a tiny bit too. I mentioned that he swelled up again when they weaned the Lasix last time and Dr. Marsh said he doesn't think that will happen this time because his blood pressure is high enough.

They stopped the Epinephrine and weaned him a little on the Dopamine because his blood pressure has been up where they want it. It was actually a little bit high today because of the steroid they have him on for his lungs.

His oscillator settings are about the same and his blood gases have been good but not good enough to lower the settings.

Dr. Marsh said that he wants to wean a little more of the Dopamine before they try to feed him. They are going to look at the x-ray of his stomach to see if the gas has moved. He said it is hard to get a good x-ray with all the excess fluid so the next one should be clearer. He said they will either try giving him a clear fluid or do a dye contrast test before they try him with milk.

They took a blood culture and a culture of the fluid from his head to check for infection. He is on an antibiotic again just as a precaution but they switched to one that doesn't effect the kidneys.

As you can see from Mark's previous post he was very upset when Nick took a turn for the worst on Tuesday. Mark compared Nick's condition to a football game by saying we are in the 4th quarter and down by ten. Nick has really improved the past day and a half. We are still in the 4th quarter but now we have the ball and are about to score a touchdown. The NICU journey has been hard on everyone and we were told it is a roller coaster ride. We hit a really low dip on the roller coaster but are moving up hill now.

Dad's entry

First of all, thank you all for your prayers and support. My wife is absolutely wonderful for making this web page. It is a great way to let everyone know what is going on with our son. Corinne has been very strong through all this and to see the way she looks at Nick, you really understand a mother's love. She is handling all this with great strength, and stability.

For a parent it is a living hell. A hell that no human can fathom. Every day I wake up praying my son is blessed with another day. Another day of progress. Another day of options in case something fails. Another day to hear me read to him, touch him, just to know I am there. Unfortunately, the options are running out. Nick has been given a "Code Drug." This is a last resort, hail mary, please God make this drug work!

I have been indulging my musical selection to the heavy metal band "Metallica." One of my favorite quotes from the song "One" states, "Please God wake me!" That is how I truly feel. This is a horrible nightmare I cannot wake up from. This was never supposed to happen this way. We did everything right. Yet, we got dealt a raw deal. I mean, what the hell did we do to deserve this? I truly feel like God is taking all the sins that Corinne and I have committed in our past, and is hitting us back 50 fold!

I can no longer be around healthy babies, or hear parents talk about their "Happy Children." It truly makes me sick to my stomach. Nick will probably not have a normal life, that is if he makes it. Yes people, that is the reality! Our son may not make it. My wife and I may lose our son!!! Talking to the Doctor today, brought the reality that the end might be near to light- that is if Nick doesn't start urinating or start stabilizing his blood pressure.

Forgive me for my grim tone. I am just having a hard time coping. I see my son there, in pain, crying, and there is NOTHING I can do to stop it. When he is in pain, and crying, my touch and the sound of my voice tend to calm him, and bring him to a more comfortable state. But that is the majority of the contact I can have with him. I used to dream of taking my boy to baseball games, his first time driving, and anything else a father dreams of. Now I just pray he makes it through. Right now, I don't know what to think. The doctors are trying to be positive, but if he doesn't do what needs to happen, then the options will have run out. Time will be short.

Please, Please, Please, don't see MY blog post, and think Corinne has the same mindset as I do. Corinne cherishes your feedback, thoughts, and prayers. She has been my rock, and foundation through all of this. She has been very positive through all of this. She is why I keep a positive exterior. She is the Mother of my child. Without Corinne, I am lost. Without Nick, I am lost. Without my family, it is nearly impossible to function.

Let me wrap it up by saying, thank you all for your support, prayers and kind feedback. I truly apologize for my tone in this blog, but it just breaks me down sometimes to where I can't hardly take it. But I press on. I press on for my son, my wife, and my family. Just know if you see me, I am not all there. So please don't expect me to be my normal self. Because, until Nick comes home I will never be content, nor rest til I know he is with us, and safe. Thank You.

Pee and Eyes

Nicholas had very good urine output today. He had 65 ml between 6am and 3pm and about 100 ml between 3pm and 6pm. Way to go Nick! He needs to keep it up. The doctor said the next few days are the most critical and will pretty much determine his fate. He needs to get all the excess fluid out so his blood pressure can stabilize and he can get off the epinephrine and dopamine. They can't try feeds until the fluid is gone and the longer he is without food the worse it is for his bones and liver. We still don't know if his digestive system is going to work yet. Hopefully his surgery fixed everything, he can digest food, and avoid a third stomach surgery.

Nick had his first eye exam today. Preemies are at rick for ROP,Retinopathy of prematurity. The blood vessels in the eyes are premature and sometimes don't develop correctly. Instead of growing where they should they can grow behind the retina and cause it to detach and cause blindness. His eyes looked good today and he will have another exam in 2 weeks. This disease shows up more as they mature so when Nick gets closer to my original due date we will have a better idea of how his eyes are.

He had an echo cardiogram today and his PDA looked closed because the tech couldn't even see it. That is good news and another surgery avoided.

He was put back on the oscillator last night. His blood gases have improved today and are good for where his settings are now.

He made some progress but is no where near being out of the woods. The next few days will tell us where he is headed since there isn't any other drug they can give him besides the Dopamine and Epinephrine for his blood pressure. He needs to continue to pee and rid himself of the fluid and everything else will start working properly.

First Family Photos

Nick's Very Bad Day

So, today has been a very bad day for Nicholas. He still isn't having much urine output and is very swollen. This is causing his blood pressure to be low because his heart can't contract like it should because of all the weight and pressure the fluid is putting on his heart. The Dopamine hasn't increased his blood pressure so they started him on what they call a "code" drug. This is basically a last resort to get his blood pressure to increase. If his blood pressure does not go up his heart will fail. So Nick really, really needs to pee right now and keep on peeing until he gets rid of all that fluid.

Mark and I both got to hold him today. They didn't want us to get the bad call without ever holding him. We were both so excited to hold him but wish it was because he was doing good and not potentially at the end of his time with us.

Nick was moved back to the regular ventilator yesterday. They also stopped his antibiotics from his stomach surgery. One of the side effects of the antibiotics is that they effect the kidneys. So, getting him off the antibiotics could help with the peeing.

We ask everyone to pray for pee and an increase in blood pressure and that God lets Nick stay with us.

Still a Swollen Boy

I haven't updated this on Nicholas the past few days because there haven't really been any changes. He is still swollen but continues to have urine output. He has been weaned from a rate of 20 to 9 on his Dopamine for his blood pressure. Dr. Amarnath said she wants to keep him on the oscillator until he gets rid of all the excess fluid. So hopefully some time this week he will be back on the regular ventilator. She said they will probably try feeds again this week once he is off the oscillator. His stomach has been a little distended but the x-rays look good. Dr. Amarnath said that the air in his intestines is moving along like they want it to. Dr. Glasser removed his stitches and his tummy looks good.

A little progress for Christmas

Merry Christmas. This has been a really hard past few days for Mark and I. It isn't easy to celebrate or be happy when you have a sick baby in the hospital. We were hoping to be able to Kangaroo him by Christmas but we still haven't been able to. Next year we can celebrate.

Nicholas has petty much stayed the same as yesterday. His urine output picked up a little but he is still swollen. He is down to 27-30% on is oxygen and they decreased the pressure on the oscillator a little bit.

Two steps forward, one step back

Nicholas has continued to improve since yesterday. His is way down on his oxygen, which is wonderful. He is in the 30's. They were able to lower the Dopamine for his low blood pressure. He pooped with the help of a suppository. That means things are able to move all the way through his intestines. There is still some air/gas showing up in the x-rays so they are going to continue giving him a suppository for a few days. His brain ultrasound looked good and they are lowering the amount of fluid they are draining each day from 15 ml to 10ml. They will continue to do ultrasounds and the neurologist will determine how much and how often they drain his reservoir.

The step back is that Nicholas stopped peeing again. They took him off the Lasix last night to see if he will pee on his own and he didn't. He swelled up a little too and is back on the Lasix. He is producing urine with the help of the diuretic. Dr. Amarnath said he is just recovering slowly and they will let him go at his pace.

A Little Progress

We talked to Dr. Amarnath tonight at the hospital and she said that Nicholas is a little better today. He is down a little on both the oscillator settings and his oxygen. The settings are still at a moderate level and Dr. Amarnath said maybe by this weekend they will move him to the ventilator. She said it is better to leave him on the oscillator longer than moving him off of it too soon.

Nicholas still hasn't pooped so they are concerned about his intestines again. They could just be healing slowly, just like the rest of this recovery, or there could be a blockage again. She said that after surgery scar tissue could form and make the openings very thin which will cause things to move slowly. They are going to give him a few more days to rest and recover before they give him a suppository and do a dye test.

He is still have good urine output but they don't want him to become dehydrated so they are taking him off the Lasix, the diuretic. Next they are going to try to wean him off of the Dopamine, which he is on for his low blood pressure. Every medication he comes off of is a good thing.

So far no infection has shown up in his urine, blood, or spinal fluid. We still have a few days to go before we are in the clear with that. He is on a new antibiotic just to be safe.

They did an ultrasound on his brain today. The ventricles where the spinal fluid collects have gotten smaller. That is good and means they are draining enough fluid from his brain everyday, 15 ml.

His echo cardiogram showed the PDA in his heart has gotten smaller. They are going to let it go and hope it closes completely on its own. They are going to monitor it still but for now we have avoided heart surgery.

Overall it was a pretty good day. He is slowly moving in the right direction and it looks like we have avoided 2 surgeries for now.

Evening update

I just got home from the hospital and have some news on Nicholas. He is down to 79% on his oxygen. It is better than where he was this morning but it is still way too high and he really needs to get off the oscillator. His swelling is still going down but he looks pretty much normal. He is able to open his eyes now too.

The doctors think he may have had a seizure last night. If he did, it could be caused just by his prematurity or because of his brain bleed. It could also be an infection in his reservoir in his head. I was looking back at my notes from the neurologist and he told me there is a 5% chance of a reservoir becoming infected. If that is class, since the reservoir is a plastic tube and can't be sterilized with antibiotics, it will have to be removed and replaced. Hopefully it is not an infection in his reservoir since that means another surgery and Nicholas is no where near stable enough for surgery. They have him on a medication to prevent more seizures right now and will do an EEG when he is off the oscillator.

He also had a small fever last night but it was gone this morning. The doctor said it might just have been because he was so active yesterday. He may have just worked himself up. They took samples of blood, urine and spinal fluid to test for infections. The results can take up to 5 days to come in since some bacteria takes that long to show up.

Still recovering

Nicholas is still recovering from his stomach surgery last Tuesday. His kidney ultrasound showed no abnormalities in his kidneys. He started to produce urine in the middle of the night Saturday. He has been having great output and is a lot less swollen. He still has a lot of excess fluid in him and his eyes are still swollen shut. Poor little guy. He was very active yesterday while we were there and appeared to be awake but he couldn't open his eyes.

His lungs are not recovering well. Nicholas is still on the high pressure ventilator, the oscillator. This ventilator gives 240 short, quick breaths a minute compared to up to 45 large breaths on the regular ventilator. Because he was so swollen, his lungs were squished and couldn't expand enough to be on the regular vent so he was put on the oscillator. The oscillator is a step backwards but the good thing is that it doesn't scar the lungs as much as the regular ventilator. We still want Nicholas to move back to the regular ventilator ASAP and wean off of that and on to CPAP. CPAP is the breathing machine that is a step above the ventilator. It pushes oxygen in through the nose rather than the lungs and does not cause scarring. Nick's oxygen level has also gone up. He had been at a really good level with the oxygen for quite a while but was up to 50-75% yesterday and he is at 100% today. We need that to go down to 21% which is what we breathe or room air. High levels of oxygen is also bad for his eyes.

Nick's electrolytes, sodium, calcium, and blood sugar are still not where they should be and his blood pressure is still very low. They are doing everything they can to correct this but his body is just taking a long time to get over the surgery. Poor little guy has gone through so much and is such a fighter. Hopefully he will make it over this hurdle soon and keep moving forward.

Oh, Mommy watched the nurse practitioner drain his reservoir on Sat. and didn't pass out. The spinal fluid that they took out looked good. They want it to be clear and not have anything floating in it. It kind of looks like a darker urine, which is good.

Rough Recovery

Nicholas is having a pretty rough recovery from his surgery. He is back on the oscillator, the high pressure ventilator. He hasn't been on that since right after he was born. His heart rate is high and his blood pressure is low.

The most important thing right now is that he really needs to pee. His kidneys aren't producing any urine so his body can't yet rid of any fluids. He is very swollen right now and because he isn't peeing his electrolytes are off and we need those to get back to normal. They are having a kidney specialist come look at him and increasing his dose of Lasix, which is a diuretic.
Please pray that Nicholas pees and he can recover from his surgery.

Nicholas after his head surgery and Mark's decorations in Nick's area.

Successful Surgery

Nicholas had part 2 of his stomach surgery yesterday, Dec. 16. He did very well. Dr. Glasser had to remove two small segments of his small intestine. There should be no long term effects from the surgery. Hopefully this will be the last one on his stomach. As long as he doesn't get a new perforation or have any scar tissue issues, we are in good shape. Once Nicholas poops they will try milk again. They are estimating about a week to let him heal and get everything moving again.

Dr. Glasser was also nice enough to stitch in his Broviac line! Kangaroo Time! Once Nick's tummy heals and he is stable enough, Mark and I should be able to do Kangaroo Care.

I'm adding more pictures so scroll down to older posts to see them all.