Wednesday, December 31, 2008

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.

Tuesday, December 30, 2008

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.

Monday, December 29, 2008

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.

Thursday, December 25, 2008

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.

Wednesday, December 24, 2008

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.

Tuesday, December 23, 2008

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.

Monday, December 22, 2008

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.

Friday, December 19, 2008

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.

Wednesday, December 17, 2008

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.

Sunday, December 14, 2008

Surgery news

Nicholas will have part two of his stomach surgery this week. Tuesday if they can fit him in, if not, Thursday for sure. Dr. Glasser will check his intestine for blockage since he wasn't able to digest milk or Pedialite. Depending on what he finds this will be his last stomach surgery or he might have to have another on. I asked him about the Broviac line and he is also going to look at it and see if he can stitch it down.

Nick's nurse practitioner had a snoopy scrub shirt on today! I asked he about the Broviac being stitched and she said she asked Dr. Glasser to try and stitch it too. She said he has been stable and in good shape for surgery. I told her it would be a great Christmas present for me to be able to Kangaroo him. Kangaroo Care is skin to skin contact. They place the baby on your bare chest and you can hold them there for hours. It is good for both baby and parent.

I asked about his PDA and she said they are doing an echo cardiogram on Tuesday. They still hear a murmur so they think it is still open but he isn't showing signs that it is bothering him. He is too big for the medicine now so they will let it heal on its own as his muscles get stronger.

Growth Spurt

Nicholas now weighs 3 lb. 4 oz. and is 15 1/4 inches long. What a big boy! He is bigger than his Cubs bear now! Thanks for the bear Great Aunt Vi!

Friday, December 12, 2008

I created this blog to keep family and friends up to date as to what is happening with Nicholas. I'm over a month late getting this started so will try to remember everything that has happened up to now. Nicholas was born at 11:58 pm on November 8, 2008 at 24 weeks.

Mark and I had gone to Charlotte for the day to go to the Renaissance Faire and to Concord Mills. On the way home I started having cramps and then they were every five minutes so we figured they must be contractions. When we got home they didn't go away and I had some bleeding so we went to the ER at Providence NE Hospital at 10pm. My doctor was on call that night, which was very nice. The nurse checked me and said she was going to call him because I was a little dilated. When he got there he said I was about 8 cm and that the baby was coming soon. I got a steroid shot for his lung development, magnesium to slow the contractions and some Demerol for pain. They had to rush me by ambulance to Palmetto Richland because they are the only hospital in Columbia with a NICU. Once we got to Richland everything is kind of a blur. I got more magnesium and Demerol and my water broke soon after I got there. There was no stopping it now. They told me to push for 10 seconds at the next contraction and Nicholas was out in I think half that time. He was born at 11:58pm at 24 weeks gestation. He was 2.1 pounds and 13 inches. They held him up so I could see him and I could see just his little nose and mouth because he already had a hat on.

The placenta did not want to come out so after 30 minutes of trying to get it out I was taken to the OR to be put under and have it scraped out. Mark was wonderful during the craziest 2 hours of our life. He was helping me and one the phone with both our families. Mark's family was at the hospital when Nicholas was born along with one of our friends. I woke up around 2am and Mark was allowed to come see me. They moved me to a recovery room and Mark went home to get some clothes and stuff.

The next day I had to sign for Nicholas to get a PICC line to be put in and a blood transfusion. The PICC line is an IV that goes into a larger vein than the regular IV a person's hand. However, they couldn't get the PICC line in so they had to do a Brovic line which is surgically placed into his chest. Nicholas also had jaundice for about 2 weeks after birth so he had on sunglasses and was under a light. My sister said Nicholas was on his first tropical vacation without mom and dad.

At about 5 days of life they did a brain ultrasound to look for bleeding. Brain bleeding is very common with preemies. The results were not what we wanted. There are 4 grades to these Intraventricular Hemorrhage, IVH, with 4 being the worst. Nicholas has a grade 4 bleed. This carries a high risk of developing Cerebral Palsy, CP. We won't know how severe or anything until he is older. CP affects the muscles so until he starts getting to the age where he will sit or crawl we really won't know.

When he was 8 days old on 11/16 he had surgery for NEC. He had a perforation in his intestines. This is usually caused by an infection and leads to dead areas that need to be removed. His was a little different. Rather than an infection, he had backed up merconium, or poop. He had several perforations and the surgeon was not able to close all of them. He had a drain placed in his stomach to drain stomach fluid and will have a second surgery to close that.

Mark got his birthday present when Nicholas opened his eyes on Nov. 18. We also had him baptized on the 18th.

On Dec. 8 Nicholas had surgery to have a reservoir put in his head. He had become hydocephalus, fluid on the brain, so they needed to drain this fluid. The reservoir is a tube that is connected to a ventricle of his brain and to a small spongy thing on the outside of his head. They can now drain the fluid daily. He will most likely have to have a shunt put in later down the road to drain the fluid permanently.

On Dec. 9 they gave him his first feeding of breast milk but he did not digest it. On Dec. 11 they tried giving him some Pedialite but he didn't digest that either. He has been on IV fluids for feedings since he was born. They give him what he needs but he is basically malnourished and at the risk of bone fractures so we really need him to digest the breast milk.