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.