Doing Remarkable

Nicholas is doing remarkably well with his recovery according to his doctor. I don't know if we have ever been told he is doing that well before. It is nice to hear for a change. He is back up to 78ml at each feed and still at 4 bottles. He has been doing great with them and is taking them all. I'll probably jinx him now by posting that. His Vapotherm was lowered to 2.5 liters and he is doing really well at that. His surgery area looks less swollen too.

Back to 4 bottles

Nicholas did so well with the bottle this weekend they put him back to 4 a day. They also increased his amount to 75ml. He is still really swollen where his surgery was. It is going to take a while to heal since his was so large an unusual. His diaper changes don't seem to bother him much anymore. He had an eye exam and the ROP is still regressing which is what we want it to do.

On the Move Again

Nicholas was moved from his temporary home in room 1 back down to Special Care in room 6 today. He is doing well. He is back up to full feeds which they have at 70ml right now. He is allowed 2-3 bottles and he took the whole thing this morning. He is down to 3 liters on the Vapoterm- he was at 2 before surgery. His incisions look the same and he still doesn't like his diaper changed but he seems to be in less pain now.

Sore Baby

Nicholas is doing well. His area is very swollen and tender. He doesn't appreciate having his diaper changed right now. I'm glad the surgery is over I just wish it didn't hurt. They are giving him 30 ml for his feeds today. I fed him a bottle and he took all 30 ml in under 5 minutes. He will be up to full feeds tomorrow or earlier if he loses his IV.

Recovering well

Nicholas is recovering well. He is down to 3.5 liters on the Vapotherm. They started feeds again. They are doing 15 ml for 4 feeds, then 30 and he should be back up to full feeds sometime this weekend. I did give him a bottle at 5pm with 15 ml in it and he took it in 3 minutes. He got 2 doses of Lasix to avoid swelling up from the extra fluids he got during surgery. His incisions look a little red so they are watching them. He is only getting Tylenol for pain but seems to be handling it well. And he loves his new Carolina pacifier!

Surgery Complete

Nicholas has his hernia repair today. This is supposed to be a fairly simple and routine procedure, but of course with our child it wasn't it. His hernia on the left side was really big and the surgeon said it was unusual because the intestine was stuck in the hernia sack. He said it was complicated to get out but he got it and everything is fine. He has an incision on each side in the crease where his legs met his pelvic area. He was also circumcised and his man area looks like it hurts. Poor guy. Another day in the life of Nicholas, nothing is normal or easy. The good news is he is already off the ventilator and back on Vapotherm. He was on the vent of 6 hours and after he woke up he was breathing over it and has a very good blood gas so they decided to extubate him. He looked a lot happier without the tube down his throat. He is already back to making his noises and facial expressions. He is at 4 liters of flow right now and they will wean him back down soon. They also plan on starting feeds again tomorrow.

Nicholas also had Grandma and Grandpa visit from Chicago this week. They both held him along with Grandma Matthews. We also found out Nicholas likes being sung to. Grandma Terri sang to him and he stopped fussing and his sats went way up. I'm going to have to learn all the lullabies and he will have to get over me being tone deaf and off key.

Another step closer to coming home. Please pray for a fast recovery and that his breathing and bottle feeding improve.

Surgery Tomorrow

Nicholas will have surgery for his hernia repair and circumcision tomorrow. He has bilateral, 2, inguinal hernias. An inguinal hernia is an opening in the inguinal canal that allows bowel to protrude through. In male infants the testicles form in the abdomen around the kidneys, they then move into the scrotal sac through the inguinal opening. The opening should close during development but if it remains open it allows a hernia to form. Nicholas has a very large one and it is uncomfortable and increases his irritability. The surgery is much less invasive than any of the other ones he has had. They aren't concerned about the surgery itself but how quickly he recovers. It should take about 2 hours and he may we off the vent sometime tomorrow. Please pray for a successful surgery and a quick recovery.

Day 136

It is hard to believe that Nicholas is 136 days old. He has spent more than 1/3 of a year in the hospital. Hopefully his hernia repair on Thursday will get him home soon. They increased his feeds to 78ml. He took his bottle this morning but not for me this afternoon. So many nurses have said babies do better without the hernias. The pressure and pain is gone so they eat better. I hope it works.

Uneventful Day

Nicholas weighs 9 lb 1oz. His feeds were increased to 77 ml and he had speech therapy. She didn't feed him but worked on oral motor skills. He has taken 1 of his 2 bottles so far today.

Better Day

Nicholas wasn't as crabby today. He still had a few spells. I think he might still be getting used to being at 2 liters of flow on the Vapotherm. They increased his feeds to 76ml every 3 hours. He is still getting 4 bottles a day. He took 3/4 yesterday and 2/2 so far today. He will get his other 2 for today during the night shift. I talked to the Dr. about speech therapy. She said that they will stop her since Nicholas is eating for the parents. She said that speech usually has to teach the parents how to feed but since we are doing fine we don't need her to teach us.

Crabby Boy

Nicholas was pretty crabby today. He didn't like being held and was having some spells. Hopefully when his hernias are fixed he will feel better. His nurse had the surgeon look at his stomach because it sticks out kind of funny. The surgeon said that it is his abdominal muscles that are sticking out. He said the muscles that would form a 6 pack are wide and weak. Having surgery weakened them further but they will go back to normal over time. He is doing ok with his bottles. He took 2 today but didn't take them all last night. They also increased him to 75 ml every feed. They cut down on his calories too. Fortifier is added to my breast milk and they make the formula to be 24 calories per ounce and they changed that to be 22 calories per ounce. He doesn't need the extra calories to gain weight any more. Hopefully he will get some good sleep tonight and be in a better mood tomorrow.

4 Bottles

Nicholas has been moved up to 4 bottles so he will get the bottle every other feed now. He took the whole thing for me. The speech therapist fed him and he only took half and then threw up on her. I think we are developing a trend of not eating and throwing up on her. I really don't think he likes the way she feeds him. I'm going to talk to his team about that. They also increased his feeds to 72 ml.

The nutritionist measured him with a measuring device that looks like what they have at shoe stores to measure your feet. He is 19 inches and this is more accurate than his weekly measuring on Mondays.

His Vapotherm was lowered to 2 liters of flow and his hernia repair is scheduled for next Thursday.

Getting the hang of the bottle

Nicholas has been doing really well with his bottles. He has taken them all so far the past 3 days! Unfortunately he has to stop eating and start over next week because of his surgery. He had an eye exam today and he still has Stage 3, Zone 2 ROP but it is starting to regress.

Change of plans again.

Nicholas is back up to 3 bottles and he took one for me in 17 minutes this afternoon. He will get the other 2 tonight. They have decided to go ahead with the hernia repair. We are waiting on the surgeon's office to schedule it and it will be sometime next week.

I thought I would try to explain the bottle feeding and G-tube a little better. Nicholas is fed 8 times a day, every 3 hours. He is on this schedule because this is the schedule they want us to use when we get home so he gets all the nutrition he needs. He is allowed to try the bottle 3 times a day right now. His 5 other feeds are fed to him through his NG tube which is in his nose. If he doesn't finish a bottle the remainder of his food is put in through the NG tube. He needs to completely finish his 3 bottles before they bump him up to 4. Then he has to completely finish all 4 to move up to 5 and so on. He is fed this often because he needs a certain amount of calories to thrive and grow. He also needs the amount of fluid they are giving him, 70ml, to keep him hydrated. He is also supposed to finish his bottles in 25 minutes. Preemies burn a lot of calories eating so if they take longer to eat they will burn more calories then they are consuming. It is extra hard work for him to take the bottle because his lungs are so damaged and it is hard to breathe.

The Dr. is recommending, but waiting for now, the G-tube because he isn't at full feeds through the bottle and the G-tube will get him home faster. If he comes home like he is now he won't be getting enough nutrition or fluids because he won't finish his bottles. The G-tube will allow us to put whatever he doesn't eat from the bottle into his stomach so he can continue to grow. We will still work with him and the bottle feeding until he gets it and the G-tube will be removed. Preemies have a lot of problems eating and this is not uncommon. The reason they want to do a G-tube is because he will do so much better developmentally outside of the hospital. You can't grow up in a hospital and he will have Mommy and Daddy there to work with him all day. Nicholas already has so much stacked against his development. Being born so extremely premature is the first thing, then he has the Grade IV brain bleed and Hydrocephalus. He is going to have life long struggles because he was so premature. Sure he looks like a normal baby, but he isn't and might not ever catch up. There is no way to know what the future holds for him. We all would rather not do the G-tube, including his doctor, but if his bottle feeding is the only thing keeping him in the hospital, it is what is best for him. I would rather work on his brain development and deal with a G-tube than leave him in the hospital longer just so can learn to eat.

The reason they want to do the hernia repair and G-tube together is so they only have to intubate, put him back on the ventilator, once and it is less strain on his already fragile body. If we wait it out, he may still never get the hang of the bottle, due to his brain being damaged by the bleed, and have to be intubabed again and go through another surgery. Every time he is intubated there is more damage done to his lungs and vocal cords. He has already had 5 surgeries and will need a shunt replacement before his first birthday. He has been through more surgery in 4 months then most people will ever go through. Each surgery also sets him back in development. He has to start over with his bottles and his body needs time to recover.

The main goal is get him home as soon as we can. Hopefully he will get the hang of it after his hernia repair and we avoid another surgery.

Happy St. Patrick's Day

Nicholas had his Upper GI test today to look for reflux. The unofficial results are- no reflux. We haven't talked to his doctor yet but his nurse said that is what the tech said during the test. That is a good thing because reflux hurts and the medications for it can have bad side effects. It also means he won't need the surgery to correct the reflux if he needs a G-tube. The bad news, we can't blame reflux for him not taking the bottle. He did take the whole thing for me this afternoon. It must have been the luck of the Irish. Ha Ha.

He weighs 8lb. 12 oz and is 20 inches long.

No surgery this week

Nicholas is not going to have his hernias repaired this week. His doctor was back on today and she wasn't happy that he hadn't increased his bottle feeds during the week she was gone. She cut him back to 2 a day to see if he can do it with more time to rest in between. She doesn't want to do the hernia repair because she thinks he will need a G-tube and wants to do the hernia and G-tube at the same time. So tomorrow they are going to do an Upper GI to check for reflux. If he is refluxing they are going to start him on Zantac and give him a little more time for the bottle feeds. If not, then we have to talk about doing the G-tube. Roar!

Status Quo

Nicholas is just hanging out like he has been today. He took 2 out of 3 bottles yesterday. He didn't finish his bottle this morning and will get the other 2 later. We should find out tomorrow when his hernia repair will be.

Slow Day

Nicholas is having a good day. He took his whole bottle this morning! He will get one at 5pm and another over night. He did well last night and took all but 5-10ml. Hopefully he is getting the hang of it.

Big Sigh of Relief

The neurosurgeon was back today and looked at the ultrasound. He said the clot and enlarging of the 4th ventricle is very common. He is not worried about it and will let it resolve on its own. It would cause more harm than good to go in surgically and remove it. It will break down on its own and move out of the body. As long as the lateral ventricle is getting smaller, which it is, we are ok.

So now we are back on track for the hernia repair next week. They are going to schedule it on Monday for sometime that week. He will also be circumcised while he is put under.

They stopped the speech therapy for now because they don't agree with the G- Tube recommendation from the therapist at this time. The hernia repair should help with his bottle feeds and his breathing. They want to see him get back to where he is now 2 weeks after the surgery. I asked about the length of time he has been stuck at three bottle and found out it is very common. Babies get to a point and can just stay there for a while. So no G-tube for now.

Now the hope is for an April homecoming but it will probably be later.

Still Bad at the Bottle

Nicholas still isn't doing very well with the bottles. They increased his feeds to 70ml every 3 hours so now he has even more he has to eat from the bottle. Mommy is getting frustrated because she just wants him to come home. I have a feeling he will end up with a G-Tube. And now that he has this weird blood clot who knows what will happen and when he will be home. What else can happen to this poor baby. He has been through so much and it feels like it is never going to end.

Mobile Video

Nicholas had a good day. No changes and he did ok with his bottles. He got all 3 during the day. He took all of one, all but 8ml of the second, and all but 15ml of his last one.

Blood Clot

Nicholas' brain ultrasound showed a blood clot in the fourth ventricle. This could have been caused by the initial IVH or from the shunt surgery- basically any bleeding in the brain could have been the source of the blood that formed the clot. It is at the base of the brain near the brain stem. The fourth ventricle is enlarged right now so the clot is blocking CSF from draining to the spinal cord. It didn't look enlarged last week but it could have been. The lateral ventricle has decreased in size because of the shunt and when that was enlarged it could have made the enlarged fourth ventricle look normal. So they really can't tell when it happened. The neurosurgeon is out of town but they called him and his assistant and NP are going to look at the ultrasound. It is not an emergency right now because it doesn't appear to be bothering him. The brain stem controls breathing, heart rate and circulation. All of that is fine on Nicholas right now. So they are going to watch him closely and see what the neurosurgeon says when he gets back. He could do nothing and hope it goes away on its own or it could require another surgery to compress it and get rid of the blockage. Just another day on the NICU roller coaster.

Other than that, he is doing well. They decreased his Vapotherm down to 2.5 liters. He took his whole bottle at 2pm and will get his other two tonight.

Dad's Entry. The life of a NICU Parent

Hello everyone. Thank you all for your prayers and support. Our son has come a long way and he is almost there, but not quite yet. I was driving on my way back from seeing my son Nick, and was thinking about my day and yet once again, "Where did it go?" Never did I think when my wife got pregnant that this would be the outcome. Everyday is an adventure, and a challenge. I love my son so dearly, and he always lifts me up no matter how bad of a day I am having. He is the reason I give 200% in everything I do. For those of you just starting in the life of being a NICU parent, or if you were blessed with a healthy full term baby, welcome to a glimpse of what being a NICU parent is all about. "It's a crazy life, but it's our life."

My wife and I both work and have hectic schedules, not counting the NICU Life. My wife is an office manager for a non-profit, and I am a Bar Manager for a Corporate Chain Sports Bar. We own a home, 2 cars, pets, careers, family, and anything else life throws at us. My wife has been taken captive by the breast pump. Every 2 hours she has to pump milk for Nick. Milk that is crucial for Nick's success for a healthy life. Everything we do is centered around her pumping schedule, that is when we have the luxury to actually see each other. Corinne works a 9-5 gig, and I work all sorts of hours. The bar business does not close at 5pm, it begins. That is just the tip of the iceberg.

On an average day, the first thing my wife does is call about Nick. Then she immediately gets to doing her first pump. 30mins of pumping then 5 mins of clean up. This is just 1 of the 7 pumps she has to do everyday. Then she takes a shower, deals with traffic, gets to work, then immediately pumps again, handles the day to day operations, calls to make sure insurance for Nick is processing correctly, which is always a headache. Around 4:30 Corinne Leaves and goes straight to the hospital to spend time with Nick til 7pm. That is when shift change is and NO ONE is allowed to visit due to information being passed about the babies. 7:30 she gets home, pumps again, cooks dinner, and updates Nick's Blog, pumps again, and maybe if there is time- relax, which is rare. If we are lucky I am not working a night shift, and maybe we can spend time together.

On MY average day, I get up, entertain the dogs, get started on getting the house ready for NIck, check my E-mails, plan my conference calls for work, checks my inventory number from the previous night, (If I did not work that night), Set a list of to-dos and get going with my day. TIME IS ALWAYS A FACTOR. Then go to see Nick, if time permits. There are times I am unable to see Nick due to my crazy schedule. I won't go into detail about my job, because it is too lengthy.

That is just a glimpse of what my wife and I do day-to-day.

Our boy Nick has been a champ through all this. 5 major surgeries, 1 very close call, I mean close. He had 72 hours to pee or we would determine whether to let him live or die. He peed on the third day, so we were fortunate. He has no peripheral vision due to a ROP, has a shunt in his head to drain the excess fluid from his brain that if left alone would cause severe brain damage, intestinal problems, chronic lung disease, is not taking the bottle like he should so he might have to get a G-tube in him. A g-tube is a tube that sticks out of his body that allows us to feed him directly into his stomach, because he is not eating enough. That is the base of what he has been through, but that is far from the end.

When he comes home he will be on oxygen, and have all sorts of crazy monitors to monitor his breathing, heart, and everything else. Sort of like a Mini-NICU in our home. He will be QUARANTINED 6 Months out of the year because of his and overall weak immune system. (In a nutshell). Basically he can not go out during the cold weather months or he could get very sick and die. Did I mention all of his physical therapy appointments, speech therapy, check ups, in home visits, and an array of other things that can happen. You thought we were busy now, wait til he comes home. WOW.

That is just a glimpse of what a NICU parent deals with everyday. For those of you parents new to the NICU, YOU ARE NOT ALONE. You'd be amazed how well you adapt when it all comes at you at 100MPH. The only thing you need to remember is that your child needs you now more than anything, and you need to show love, support, and never, I mean NEVER, EVER, give up hope.

To the parents with healthy children, consider yourselves the fortunate ones. I would never wish the hell my wife and I went through on anyone. Every time you look at your child, or children, just know no matter how much they test your patience, you never had to experience the stress, the hell, the tears, the hours of prayers, the loss of hope, sleep, and appetite that a NICU parent deals with everyday. You are truly lucky.

Oh, my son is the best looking, and best overall to ever grace the face of the Earth. If you disagree, then just know this.....I am right and you are wrong. HA HA HA HA HA HA HA HA HA!!!!!!!!

It's a crazy life, but it's our life.

Thank you Angie and Beth,(The best NICU Nurses Ever) for helping us to feel human, and being with us every step of the way.

Mark

Mirror Fun

We bought Nicholas a mirror today and he loved it. He looked at himself and smiled for over an hour before we moved it so he would sleep. They increased his feeds to 68ml every 3 hours and he is still at 3 bottles. The speech therapist said he did poor today. He took 62 ml out of 68 but threw up. She also said he has poor sucking coordination. She said in the past that he has good sucking coordination. She also recommended a swallow study and a G-Tube. He took his whole bottle at 5 and didn't de-sat and if he took just about all of his bottle this morning I would say that is good. So what if he threw some of it up, babies do that. But I'm not a speech therapist. It seems like the speech therapist is giving up on him but when different people feed him he does fine. We will see what his doctor says because we are not happy with this recommendation and do not want a G-Tube.

4 Months Old Today

Nicholas discovered his St. Patrick's Day bear today and stared at it all morning and early afternoon. He liked it so much he wouldn't take a nap so his nurse had to move it. He also enjoyed looking at his hand for a while too. It is so nice to see him doing normal baby things and he is starting to show his personality. We aren't just looking at a sick micro preemie anymore.

The only change for him is they increased his feeds by 1 ml so he is up to 66 ml every 3 hours. He took all of 2 out of 3 bottles yesterday and all of his first one today. Hopefully he will keep moving in the right direction and be able to increase to 4 in a few days.

He didn't pee off any weight after getting his first dose of Lasix but he only gained 6 grams so that is good. Preemies have a hard time digesting protein and it is very common for them to retain fluids. Some need a diuretic every day so he has actually been good with this and needs some help every once in a while.

We finished the walls in his room this weekend. We have to put the crib together and arrange the furniture and we are done!

Chuncky Monkey

His shunt is visible in this picture. It is on the side of his head.

Nicholas has gained too much weight the past few days so they gave him two doses of Lasix today. He is up to 7lb., 14oz! He will pee some of that off since he is retaining fluid.

He did well with his last two bottles and took the whole thing. Hopefully he will take his other two today and be able to move up to four.

Little Stinker

Nicholas is being a little stinker with his bottles. He is doing worse and not finishing them. He needs to finish all three completely in 20 minutes before they will bump him up to four. Maybe his favorite nurse and get him to cooperate this weekend. :) They did increase him to 65ml every three hours.

His eyes are still Stage 3, Zone 2 ROP so they have not changed and they will check them again in 2 weeks.

Dr. A thinks his hernias might be bothering him and that might have something to do with him not finishing his bottles and having a hard time weaning on the Vapotherm. We are going to talk about scheduling that surgery when she gets back on her next rotation. Hopefully he will increase his bottles by then and we can avoid the G-Tube all together or at least a separate surgery for that.

No more stitches

Nicholas had all his stitches removed today. His head and behind his ear looks good but his neck is a little ugly. I think it is from the glue they used and it should go away. His eye exam was rescheduled for tomorrow. He is still at 3.5 liters on the Vapotherm and getting 64ml of milk every 3 hours. He took his whole bottle for his night nurse and just about all of it today for speech and for me. He had 3 bad spells last night so they did labs this morning and they were fine so there isn't any worry about an infection. That's pretty much it.

Didn't like the bottle today

Nicholas didn't do as well with the bottle last night and today. He took most of it over night and this afternoon. He took all of it for the speech therapist but she had a hard time and he was messy. Hopefully he was just tired and will get back on track.

He is back down to 3.5 liters of flow on the Vapotherm. His stitches will be removed tomorrow.

He has an eye exam tomorrow. The one from last week showed no progression in his ROP. That is what we want and means the surgery stopped it.

3 Bottles

Nicholas has moved on to 3 bottles a day. He took the whole thing each time he has been fed so far. They also increased his feeds to 64 ml every 3 hours.

He is 7lb. 4oz. and 18 inches.

He had a few bad spells so they moved his Vapotherm back up to 4 liters a minute. He isn't having spells when he eats which is a plus.

His brain ultrasound showed the ventricles have gotten smaller. That is what they want them to do and means the shunt is working properly.

2 Bottles

Nicholas is back up to 2 bottles a day. He did well when I fed him and took the whole thing. They decreased his Vapotherm flow to 3.5 liters a minute. That's it- pretty slow day.

Started the Bottle

Nicholas got to start the bottle again today. He did pretty well- 45 out of 60ml in 15min. They are going to give him 1 a day for now. They had to increase his flow to 4 on the Vapoterm because he was having some self-correcting spells. They are doing a brain ultrasound on Tuesday to check and see how the shunt is working. His head feels a lot better since it was put in- it isn't as squishy on top and in the back. He also lost some weight from having the Lasix and is at 7lb 1oz. They are going to moniter his weight gain and will give him another dose if it is needed.