9:45pm: We had a good visit with Reid today and he stayed awake for most of our 6 hour visit. It is nice to be able to get smiles out of him - almost on demand. He might even have a slight tickle-spot on his cheeks and under his chin.

His CO2 was 63 today and because it was a little elevated, they did not wean his flow. His oxygen was at 45% all day today and was sat'ing in the 98-100 range. And now that is has been over 24 hours without the prednisone, I have a feeling that the next time he has a good CO2 gas, he will be weaned again.

So, today was a quiet day... that is until about 9:15 tonight when we got a phone call from the hospital (and we know it is never a fun call when the hospital calls). Reid had a melt-down right after we left tonight. We think that he is starting to know when we leave --- he is so used to us playing with him for extended periods of time and then it is a rude awakening when we leave. Anyway, long story short... during his melt-down, he decided to pull his g-tube out. He grabbed a hold of it, and before the nurse could do anything about it, he ripped it right out. Luckily, one of the surgeons was in the NICU at the time and he was able to put it right back in. And with all of this chaos, another trip to radiology was needed and he was loaded into the transport isolette, where he decides that he wants to smart smiling and have a good time. Everything checked out OK so he is back up in his room sleeping. Not sure what we can do to prevent this from happening again other than keeping the boy clothed (right now he has mittens on his hands). Over time, I don't think this will be an issue as the site will have healed and we wont have the risk of his stomach separating from the belly where the g-tube goes. We dodged another bullet tonight.

Well, it is getting time for bed, so I will leave you with a few pictures:

4:15pm: A pretty quiet day for Reid today. He is officially weaned off the prednisone steroid so we are anxious to see over the next couple of days how he reacts. I believe that he was on such a small dosage over the past few days, that we have probably seen all of the effects that he is going to have, but we are anxious nonetheless.

His feedings have also been increased from 28cc per hour to 30cc per hour. I guess with the recent weight gain, he is capable of having more milk.

No weaning of his flow today. I am guessing, this may resume over the next few days assuming his CO2 levels remain steady. His CO2 last night was 59. Again, I believe the doctors are worried about doing too much at one time. We also know that the weaning process from 5 liters down to eventually none is going to be a time consuming process. We aren't going to see the fast weaning that we originally saw when we went from 16 to 5.

9:15pm: guess who weighs 11.59 lbs (5.255kg)?? So chubby he has developed a little bit of a yeast infection under his chin. His neck doesn't get a whole lot of air flow and after a while, the tissue starts to break down a little bit from the excessive moisture. He was treated with some powder that will help keep it dry and kill the fungus. We assume this will take a few days to get under control.

His central line dressing was removed tonight right before we gave him a bath. His dermabond (super glue holding his incisions together after surgery) are starting to pull away from his skin and his incisions are really starting to look a little more healed.

Reid spent about thirty minutes with the developmental therapist this afternoon and after his assessment they determined that he is right on track for his adjusted age of three months. The one thing that they noticed he wasn't doing was staying focused on people's faces. He will lock in on other objects but may be a little behind on holding on to our gaze. On a similar topic, I gave him a plastic ring to hold onto tonight and he kept a hold of it for a good 10 minutes - swinging it around, keeping it next to him, etc.

Ok- time to hit the road and head back home. We have had a good visit and it is bedtime for Mr. Reid.

2:45pm: No changes today for Reid. He had a CO2 of 60 this morning but was a little fussy when they took the blood, so that may have slightly increased his number. He managed to sleep the entire night in the swing we brought in for him the other day and was not touched until shift change around 7:30 this morning. Because he hadn't been touched, he woke up with a V-E-R-Y messy diaper that just set him off. If anyone knows Reid, he does not like to have a dirty diaper... he lets you know about it right away. So, he essentially went 10-12 hrs last night without having a change in diaper and it was all over the place... him and the new swing. In fact, he was so upset about it, the nurse had to temporarily increase his O2 to 100%. When Kristen called at 6:30 this morning to check on him, the night nurse said she hadn't touched him all night as she didn't want to wake him up. And the first thing Kristen said to me when she hung up the phone --- Reid is going to not wake up on the right side of the bed today. Boy, was she right!

Anyway, the past two days have been touch and go for Reid. He hasn't been the happiest baby in the world and I think the doctors are afraid of rocking his boat too much and have decided not to adjust any of his medications or flow. I guess we will see what tomorrow brings for him.

10:00pm: A quick blog before I go to bed... I did not make it into the hospital today, so I will try to paint the same picture of what Kristen painted for me...

The visit was somewhat stressful as Reid was sweaty and had a heart rate which was much higher than normal. The room was rather warm, so that may have had something to do with it and the nurse seemed somewhat concerned (his temperature was still just shy of the threshold where they start to get worried). The doctor wasn't overly concerned, but would keep an eye on how his day progressed. After an adjustment to the temperature in the room and a massive bowel movement, Reid's heart rate started to come down and he eventually fell asleep. Not sure if it was the temp in the room or the bowel movement, but one of them seemed to do the job. Before Kristen left for the evening (after being there for about 4 hours), he seemed to be back to normal. What concerns us the most is that if this was absolutely nothing, what is going to happen when he comes home and we have the same thing happen? How are we going to know if this is truly an issue... or something that babies normally do? As I have said in the past, we have a really hard time judging what is a premature/sick baby issue or a normal baby issue. Being that Reid is our first, we really have nothing to go off of.

Other news today, Reid's central line was finally removed. After the sutures were removed and a couple of small tugs, the line is out and he is bandaged up for the next 24 hours. One less thing to worry about...

Not much else to report tonight, so I will leave you with a couple of pictures that Kristen took today. In one of them, you will see that he is grasping onto two things - he is really starting to show signs of meeting milestones that are normal of a 3 month old (Reid is physically 6 months old, but adjusted due to his prematurity, he is 3 months old). Kristen said that he is even trying to lift his head up on his own.





11:15am: Not much is new with Reid today - which I guess is a good thing. He ended up sleeping the entire night in his bouncy chair and had a CO2 of 61. No pressure/flow change today... but when speaking to the doctor yesterday, he said that he wasn't going to wean until Thursday (at the earliest) anyway. He said with the really good CO2 gas yesterday, it was hard not to wean, but he wanted to give some time for Reid to stabilize as they have been actively weaning his prednisone. On Friday, he will be completely off the prednisone and solely on the hydrocortizone - which I imagine will start to gradually wean over time. In order for Reid to grow like he needs to, these steroids need to be out of his system. His central line was supposed to be removed yesterday but I think the surgeon ran out of time. Kristen just called the nurse and said that it was set to be removed within the hour.

8:45pm: What a cool day for Reid (and his parents)! A trip outside the NICU for the first time and the ability to breath some fresh 70-degree air, get some sunshine and listen to the birds chirp! After Reid was hooked up to his portable oxygen tank, the portable pulse-ox and put into his stroller that is still a little too big for him, he wanted nothing to do with this trip we were about to take. He cried and cried and as soon as the stroller started moving, he calmed down and just looked around. And if you stopped, he was upset all over again. After eventually making it down the elevator, through the doors to the outside, and pulled over to some benches, Kristen had to pull him out of his stroller to get him to calm down. Once under control, we put him back in his stroller where he was pretty relaxed. The sun was a little bright and he had his eyes closed most of the time. Kristen and I made several laps around the Egleston gardens while his nurse and respiratory therapist sat down and watched us from afar on the park bench. At one point Reid heard the birds chirping, opened his eyes and let them wonder. So, he thought to himself... this is what life is like outside of the NICU?? We stayed outside for about 30 minutes, packed up and got him back up to the room without any troubles. He was probably on sensory overload, but Kristen and I still have smiles on our faces this evening. It was something that we had dreamed about for a long time... taking him on a stroll in the park, forgetting about all of the negative things we have experienced, and just do what normal families do with a newborn child (even if it were for a few short minutes). Here are a few pictures:






11:45am: Reid had another good CO2 gas last night of 51. Unfortunately, they didn't wean, but I think that he has probably had enough over the past few days to warrant a rest in the weaning.

Today is a big day for Reid though as he is getting his central line removed. They will give him dose of morphine before pulling it out. And the best news of the day is that Reid gets to take his first trip outside in his stroller. He will get a portable oxygen tank and Kristen, the nurse and I will take a stroll with Mr. Reid. It is a beautiful day today so we are thrilled!

The nurse said that Reid was babbling this morning and was a sight to see! Over the past few days, Reid has really turned into a new baby and we are excited to see the changes on a daily basis.

7:30pm: What started out to an enjoyable scrub down in a big boy tub ended up in a little chaos. As soon as he was done with his bath and was being toweled down, his g-tube decided to pop out. A quick call down to surgery and the surgeon came up to the room and put it back in. We just got back from radiology where they did a dye study to ensure that the button is back in it's proper place - and it was.

Ideally, the first button change isn't supposed to occur until 8 weeks after surgery. It usually takes several weeks for the wound to heal and the stomach to adhere to his belly. If the stomach had separated from the belly, it would have meant a trip to the OR, intubation and general anesthesia to get the button aligned and secured. We dodged a huge bullet today.

We aren't sure what caused the button to come out. There might have been a little tug or he may have flexed his stomach muscles just right?? Nonetheless, it is back in, he is asleep and we can rest easy knowing there isn't another trip to the OR.

12:15pm: Well... some more good news. They weaned Reid down to 5 liter flow and he seems to be handling it just fine.

The doctor has made official orders for the nurses to "entertain" Reid. He has noticed that Reid is finally at a point where he needs the interaction and is bored and cranky when he is left alone. So on top of top-notch medical care, we are going to get top-notch day care. :) I am going to try and disassemble his swing here at home and bring it into the NICU tonight. Hopefully this will hep him as well. Physical Therapy has noticed that his suck is getting stronger and is actually able to hold the pacifier in his mouth a little easier. They have also commented on the strength of his grip and that it seems to be getting stronger as well.

They have removed the safflower oil from his feeds as he is getting a little too pudgy. They have also increased the fortification of the breast milk to 26 calories. It was at 24 calories as they were previously afraid of the milk clogging his NJ tube that was feeding Reid before surgery (fortifying makes it thicker). But now that he is being fed through his g-tube, it can handle the thicker milk.

His central line is most likely going to come out tomorrow or the following day. He doesn't really have a need for it anymore and are worried about the chance for infection. It has been in for almost 3 months, so it is probably time it came out anyway.

Kristen is on spring break this week and has allowed her to be at the hospital this afternoon. I will go tonight after I finish working for the day.

8:35am: Reid started last night off a little rocky and was uncontrollably upset from 8:30-10:30pm but finally calmed down and slept the entire night. Even at 4am when the nurse had to prick his heel to get the blood for the gas test and change his diaper.. he didn't cry and fell right back asleep. It is amazing how the little things can set him off and the things that we would expect for him to get upset with don't even phase him. He had an awesome CO2 of 49! We are curious to see if they are going to wean his flow/pressures again as they are also weaning his methadone and prednisone today.

4:25pm: Reid had another good CO2 gas last night of 52. Subsequently, they decided to wean him again on his flow --- 6 liters! He is off all fluids (hyperal and now clears) and is up to 28cc of milk per hour.

I stayed home today to get some of the remaining yard work done and now about to go run to the grocery store. Kristen took off to the NICU around 2 this afternoon after we got a late start to the day. She has enjoyed her visit.. Reid was in the crib looking at himself in the mirror and just smiling away. When the nurse tried to put him in his chair, he wanted nothing to do with it, so she put him back in his crib and he was happy once again. He enjoys looking at his mirror and mobile, so I guess if he is happy - that is all that matters.

Other news... The nurse told us yesterday that we needed to take home most of the clothes that we had brought in for Reid. He is getting too big and she told us to start bringing in the 3-6 month clothes. Kristen sorted through all of the clothes that we have at home this morning and it is frustrating to see all of the cool things that he never got to wear. Some items are just not meant to be worn by a baby who is connected to machines and pumps by lots of little tubes...

9:15pm: Sorry for the lack of posts today, but it has been a busy day. I finally got a chance this morning to do some much needed yard work in preparation for the spring weather. I have been dying to get outside - it is my way of relaxing and getting my mind off of things. Kristen kept busy and got some house cleaning done - it seems that our weeks fly by and we have little time to pick up after ourselves, so the house looks good.

We got to the NICU about 2 this afternoon and spent most of the day/evening with Reid. He was sleeping when we got in, so we kicked back in the chairs and had a quiet afternoon until Reid woke up. Kristen was able to get some reading done on her new "Kindle" and I was able to surf the web for a little bit on my phone. When Reid woke up, we were pleasantly surprised to have the smiling/laughing baby that we had last week back in our lives. Since surgery, he has been so drugged up and in pain, that we thought it was going to be forever until we saw him in this good mood again. I had him on my lap for a good 45 minutes and he would look at me... look at Kristen... we would laugh at him and he would "laugh" right back. When we put him back in the bed, he was kicking his legs, swinging his arms and just moving around like a normal baby would. I assume he isn't really in pain anymore and his range of movements is definitely getting better. One other thing that was nice to see was that towards the end of our visit, he got uncontrollably upset... his pacifier didn't seem to help, rubbing his head didn't seem to phase him... and when all else failed, Kristen picked him up and he *immediately* silenced. She rocked him for a few moments, put him back in bed, and he was relaxed. She has the touch! And the most important thing to note is that he is appreciating the touching and holding that he always associated with negativity.

As I mentioned in an earlier post, he got a new bed the other day. This bed is HUGE -- probably 3 times bigger than his previous one. It's nice as we now have room to set his stuffed animals, mirrors, toys, etc in... and the best part of all is that we can put his play mat in the bed and lay him on it. We have been told by physical therapy that he needs to move on past doing range of motion exercises that we have been doing over the past three weeks. He now needs to be able to reach for things, swat at things, and be used to being sat up. So, this mat will work good for him in that he has things dangling above him that he can reach for.

His CO2 last night was a "so-so" 60 - he has had better gasses over the past few days. He did not get weaned on his pressures but the doctor plans on weaning him down to 6 liters on Monday assuming his gasses stay good/consistent. The changes for today included: increase to 24cc of milk every hour; removal of hyperal and lipids and now on "clears" until he is maxed out on full feeds (which was previously 28cc); all of his medicines are now going through his g-tube; and upgraded to a new diaper size. Tomorrow, he will be further weaned on the prednisone steroid. Oxygen hovered in the 40-50% range today.

Anyway, it is nice to have a happy baby again. We are still getting a lot of nurses, therapists and doctors popping their head in the room congratulating us and commenting on how well he is doing. This gives us a big sigh of relief --- that's for sure! Well, it is time to start winding down for the evening, so I will wrap this note up. Hope everyone is enjoying their weekend.

Oh.. and one more picture. 4.95 kg or 10.9 lbs. Mr. Chubby Cheeks:

12:15pm: A quick update:

• Reid has been weaned to 7 liters because of his good CO2 gas this morning!! He was on 6 the day before surgery but had only been there for one day.


• They started feeding him 10cc of milk every hour. At 6pm tonight, they will increase the feed to 15cc every hour.


• They have started weaning the hydrocortisone that they started him on the day before surgery. They will start the weaning process of the prednisone again starting tomorrow.


• Reid now has a "big boy" bed. Pictures to come later.

9:00am: Reid is continuing to have his "moments". It is unknown what is causing him to cry uncontrollably - discomfort, pain, hunger, etc? However, our nurse last night found out that if she can race to his bedside as soon as he starts crying, that he is a little more consolable. The longer you wait, the harder it is to calm him down.

His CO2 was 49 last night. This is a really good gas.

We are hoping feeds start today. We will know more after the doctors have made their rounds.

8:15pm: I didn't make it to the NICU today but Kristen was able to spend the majority of the day hanging out with Mr. Reid. Much to our surprise, Kristen was able to hold him on her lap. The doctors had tried changing his morphine doses to every three hours (instead of 2), but there wasn't much success on this front. I think the pain is still to heavy for him.

His g-tube stitches came out this afternoon. It was a very quick process, but Reid knew what was going on and cried a little bit, but almost immediately calmed down and then fell asleep.

They also started Pedialyte through his tube today... it wasn't much - 5cc every three hours. It went into his stomach and then would come back out his tube depending on pressures and then would ultimately settle back into his stomach. I believe that when he comes home, after we feed him, we will close the "button" which will prevent this from happening. But for the time being, they are making sure that he is well ventilated to help with the tenderness of his surgeries and also help the air from the high flow ease its way out. Reid no longer has the easy ability to let gas/air escape back through his mouth and I am sure we will face issues when he comes home with burping him. The angle at which his esophagus and his stomach meet has changed and prevents this sort of thing from happening. Long story short, they will start cautious feeds tomorrow assuming the rest of the night goes well for him. Kristen and I are super anxious to get that food in his belly. I guess it has been a couple of months since he has actually had food in his stomach. When fed through his NJ tube, it went straight into his intestines. I can't imagine what it would feel like to never have that "full" sensation.

All in all, Reid had another good day. Various doctors have stopped by to congratulate us and wish Reid well -- I think he has far surpassed many of the doctors expectations. It is hard to get overly excited about the doctors being excited... life in the NICU always throws curve balls and we never know when the next one is coming. So yes, we are ecstatic, but we are trying to not let Reid know this. :)

11:15am: I think Reid had a fairly uncomfortable evening last night. It is hard to tell what he is complaining about as it could be a plethora of different things: hunger, pain, tired of laying down, etc. About 4 this morning, the nurse ended up taking him out of bed and put him in his "chair" and he fell asleep and seemed relaxed. They also took out the IV that was in his foot as we believe this was causing some discomfort as well (it was needed for the blood transfusion).

This morning, he was supposed to start getting fed clear liquids (like Pedialyte) and will hopefully start getting fed milk later today or tomorrow. They want to ensure that his stomach and g-tube can handle the feeds first before they start putting in something like milk. We are anxious to get him food as he has gone over 2 days without any and I am sure he is hungry. When the milk does start again, he will be fed cautiously and will regain full feeds within the next 3 days (give or take a little bit).

Today, Reid is also supposed to get his stitches out fro his g-tube. Not a big deal -- just part of the recovery process from surgery.

And one last thing: I had asked for Reid's measurements so I could start seeing his growth trending. The last date they had a complete set of measurements (head circumference, length and weight) was on 02.28.2010, so I plugged these (head: 39cm; length: 58.5cm or 23 inches; weight: 4.85kg) into a tool I found on the web for premature babies and this is how he compares (click on image to make it bigger - dark black line is 50th percentile):

7:15pm: I ended up staying the entire day with Reid and I am glad that I did as the NICU decided to throw Reid a little 6 month birthday party. We sang to him and ate cake. And yes, Reid had a little bit of cake himself... well, icing anyway. He didn't really know what to do with it until I put his pacifier in his mouth and then he went to town. It was a good celebration and I got to take pictures of it... blue stained lip and all:






1:15pm: the last blood gas test showed a CO2 of 42. Because of this, his arterial line in his leg will be coming out. Gas tests aren't needed as often now and the risk of having an art line in a major artery in his leg is not worth the risk.

I have enjoyed my visit with Reid today. I have been at his bedside when he isn't asleep and trying to get some work done on my laptop when he is. It is amazing though, if you cover up his stomach, you would never know he had surgery yesterday. He is keeping himself busy moving around and sucking on his pacifier.

11:00am: I just got Reid back to sleep after his IV was placed in the top of his right foot. I was in the room when they gave the IV and after a few sticks, they finally had some luck.

Just got done talking to the doctor. He is very excited with the progress he has made but knows he has to walk a fine line to keep Reid awake enough so that his breathing keeps normal, but sedated just enough so that he isn't in pain. He is afraid that if he goes too much to one side, his CO2 levels will go up.

Feeds will probably resume tomorrow, however, he did want to talk to the surgeons to get their buy-in. He has had quite a bit of work done to him yesterday and want to make sure they feel he can handle the feeds. Nonetheless, he will start the feeds very cautiously and work his way up.

Flow will probably stay at 8 liter for a little while, but is all going to be based upon how Reid reacts. Again, the doctor doesn't want to rock the boat before he has had a chance to recover from the surgery. He is currently on 50% O2 but his saturations are hovering 99-100.. I expect to see this weaned as their goal is to stay above 95 sats.


10:15am: Just got to the hospital about 15 minutes ago and Reid looks really good! It is nice to not see the NJ tube in his nose or the ET or OG tube in his mouth and only the nasal cannulas. They extubated him and put him on 10 liter flow and have already been able to wean him to 8 liter based upon his good CO2. His arterial gas showed 39 (which compares to about a 49 previously as this gas is taken from an artery). They probably won't wean any further today and will probably resume the previous weaning schedule as before. Now that he is off the vent, they don't want to push him too hard where he tires out.

Right now, they are working on getting an IV. His hematocrit levels were a little low and want to transfuse to give him a boost. The transfusion they gave him yesterday was very small (20 cc).

I cant get over how good he looks though. He is moving all around, kicking his feet, moving his arms and playing around with his new g-tube. The nurse thinks that because of all of this moving it is helping with his swelling. He looks a little puffy but not bad. His hernia site is looking good as well - not very swollen at all.

8:15am: Reid was extubated at 8am! Everything looks good so far and they are waiting on a gas test.

7:45am: Reid had a pretty fussy night last night as he started to wake up and realized that he was now trying to breathe down a straw. They pushed him hard last night and they have gotten him down to 14 breaths per minute on the vent and allowing him to breathe on his own. Subsequently, they are planning to extubate at 8:00am!!

Kristen is back to work today and I am about to get ready to drive into the hospital. Hopefully some pictures of him off the vent sometime later this morning. We are just crossing our fingers that the extubation goes well and he is capable of handling the high flow once again.

3:00pm: We are finally back in Reid's room and he looks good. Well, as good as you can look with a tube down your throat and a bunch of incisions on your body.

We met with the doctor and they are planning on pushing Reid pretty hard and plan on extubating him tomorrow. His CO2 gas tests were good (39), his O2 is back down to 40% (which is where it was pre-op... it was at 50% during surgery), his vent rate (breaths per minute) is at 37 (doctor was expecting somewhere in the low 50s - so this is a good thing) and his PEEP (pressure support) is at 6. They are going to wean pretty heavily once he starts waking up and they plan on extubating when he is at about 25 breaths per minute. And when weaned, he will be put on 8 liter flow (2 above what he went into surgery with).

Feeds will resume within the next 48 hours and they will gradually increase his feeds over a couple of days before he is back up to full feeds. They want to make sure that his stomach is tolerating the feeds before going all the way up.

All in all, he had a total of 7 incisions: 2 for his hernias (just below where his diaper comes up to), 1 in his belly button and 4 in the abdomen (1 on each side and two near the middle). One of the incisions they used for the nissen procedure is actually where his g-tube was placed.

Before surgery, they had to place an arterial line in his femural artery in his thigh. They tried in his arms and had no luck. Because this is not an ideal place to have a line, they will pull it as soon as possible - most likely when they try extubation tomorrow.

During the nissen procedure, they were able to see that Reid's anatomy was normal in the sense that his esophagus was of proper length and his stomach was normal. They part that they found that was most likely the root of the reflux was the esophageal hiatus was a little loose. This is the natural opening in the diaphram that creates a sphincter to prevent stomach contents from coming up. They tightened this up with a suture.

Anyway, the surgery is over and it is time for recovery. His hernia repair is expected to be fairly swollen and bruised over the next few days and will take a couple of weeks to come back to normal. The other wounds should heal fairly well and pretty quick. We are excited about the possible extubation tomorrow and grateful that they want to push Reid. The sooner he is off the vent, the sooner we can focus on healing his lungs. He will continue to get a stress dose of hydrocortisone over the next few days that will eventually be phased out and put back on the prednisone. Once on the prednisone again, they will start the gradual weaning of that (as they were pre-surgery).

So far, so good. Tonight will be a little more interesting as he starts to wake up. Right now, he is moving his fingers and toes and the occasional shoulder shrug. We thank God that he has gotten us through these procedures and everything went as planned. We also thank everyone for their continued prayers and support - they are paying off! Mom and dad, thank you for coming down and hanging out with us in the waiting room today and glad that you were able to see Reid this afternoon.

Well, I am going to wrap this post up but will leave you with some pictures of Reid:










12:45pm: Reid is done! He did well and is on his way back to his room. We are going to go grab some lunch and then visit Reid. I will post more details in a little bit... but did want to post that everything went great!

12:00pm: Just got an update from the nurse and said Reid has about another hour and a half to go. They are still working on the nissen and will continue on with the g-tube afterwards. They are also going to go ahead and give him a blood transfusion as his blood counts were a little low. Not that he has lost a lot of blood in the procedure, but his counts were on the lower side before they started.

10:45am: They just finished with the hernia repair and are now moving onto the nissen procedure. The hernia repair took just under an hour and Reid is doing just fine.

9:40am: Almost exactly 45 minutes after they took Reid back, the nurse called to let us know that the prep work went as planned and that he was very stable. His intubation went well and the surgeon was getting to start.

9:15am: The OR came to get Reid around 8:45 and we said our goodbye's shortly before 9. We met with the attending surgeon, anesthetist and his surgical nurse shortly before he was wheeled into the OR to explain how today was going to work. As soon as they get him in the room, they are going to give him some gas to knock him out before they start with the intubation, the arterial line and the IVs. He won't feel a thing. Once the prep work is complete (within an hour), they will start with the right hernia (which is the worst of the two) and then move onto the left. They wanted to do these first as this is what he originally came to Egleston for... and if everything was going smoothly as planned, they would continue with the nissen and then the g-tube.

We are now in the waiting room patiently waiting to hear back from the nurse. She will call as soon as surgery starts to let us know the prep work was completed and then will call about every hour afterwards to let us know that things are going OK. So, including the prep time, we are looking at a 4 hour procedure and will need to wait about another hour after surgery before we will be able to see him.

We did have one bit of good news this morning that we didn't find out yesterday, but they weaned his flow to 6 liters yesterday. The doctors are pleased to see the progress that he is making and feel a little more confident about where we stand.

And since I have a little time to kill in the waiting room, here are a few pictures from last night and this morning.

Tough Cookie: we bought this outfit for him before he was transported here back in December for his surgeries. This picture was taken last night and Reid is looking up at his mom who is holding him:



Picture of Reid this morning when we first got to the NICU. He is naked, swaddled, ready for surgery and catching a quick catnap with his beloved dragon wubbabub:



The first pictures below is when the OR came to get him and right before Kristen had to put him in the transport isolette. The second picture is of Reid in the OR holding room seconds before being wheeled back to his sterile operating room. this is where we kissed him good luck.





8:00am: the OR just called and said that it would probably be about an hour before they started on Reid as they were running a little behind on their first patient. Kristen is holding him right now and he is, for the most part, asleep. There are a couple times where he starts sucking on nothing and is making a funny noise so we are getting a few chuckles out of it.

Reid had a decent night last night. His hernias came out around 10:30 last night and he woke up screaming again, but was able to sleep peacefully the rest of the night. And a repeat of the night before, his CO2 was 52. Oxygen is holding at 40% (he is not allowed to go below 40 though).

For the most part, we are ready for today and we feel confident. Just not fun to think about what Reid is going to go through over the next few days. We remind ourselves that he will remain strong and get through this as he has done before.

6:00am: it is hard to believe that six months ago we welcomed Reid into this world. It has been a long ride getting to where we are today, but some of the happiest days of my life have come thanks to this little man. Happy 6 month birthday buddy!!

10:45pm: We had somewhat of a short visit with Reid tonight. We got to the NICU around 6:30 and Kristen held him for about an hour before we put him back up to go to bed. We went to dinner in the cafeteria and came back up and he was sound asleep, so we let him be. He was a little fussy tonight and had a hard time settling down so we didn't want to wake a sleeping baby. I don't think he was in pain, but maybe a little uncomfortable.

We did have a nice visit with the surgeon this evening. We discussed the three procedures and the risks associated with him. He will most likely be wheeled to the OR shortly after 8am tomorrow and will be sedated and intubated right before surgery. He will also be given Versed that will prevent him from remembering the intubation as well. The surgeries will all be done laparoscopically and the nissen procedure will require 5 small incisions -- one in the belly button, and 4 more in his abdomen. After this is completed, one of the incisions that is used for the nissen will eventually be where the g-tube is placed to avoid needing another cut. His hernia surgery will require two small incisions (between a half to three-quarter inch) on both sides of his groin. All procedures will take about 3 hours. When asked, the surgeon thought that this procedure would be less painful and invasive than the PDA ligation.

Reid, at a minimum, will be on the vent for about 2 or 3 days. When they are ready to start easing him off the heavy pain meds and he is is starting to become aware of the tube in his throat, they plan on extubating him and not give him the chance to fight it. They know how well he does not do on the vent and they have seen the progress he has made over the past few weeks, and are willing to take a risk of him coming off the vent rather quickly. When extubated, he will most likely be put on 6 to 8 liter flow (roughly where he is now). They know that 16 liter flow didn't do much for Reid and also know that higher pressures in some cases may have caused a higher CO2. Overall, we are pleased with the plan for a quick extubation - this is what we are most nervous about.

About 2 days after surgery, the surgeon will come and remove two stitches that are needed to bring the stomach up to his abdominal wall. When the g-tube is inserted, the abdomen needs to be butted up against the stomach so that it can go straight in. Over a period of about 8 weeks, the stomach will actually fuse against the abdominal wall, at which time they will then replace his g-tube "button" for the first time. We will be trained on how to change it in the event it falls out or when it is routinely changed about every 2 to 3 months.

After surgery, Reid will be wrapped tightly with his legs close to his body to help prevent the legs stretching out his abdomen and helping with the pain. The small incisions for his nissen should heal quickly, but will take a good 3 weeks for his hernias to look somewhat normal. There is quite a bit of swelling and the surgeon mentioned that it will probably look like the hernias are out and the surgery was not a success for a couple of weeks. Over time though, the swelling will reduce.

We are not anxious about seeing Reid on the vent, but we are anxious for this surgery to be over with. We have had this hanging over our heads for the past several months and it will be nice to put this to bed. And speaking of bed, it is time to see if we can fall asleep. I know we have a lot of nervous feelings right now, so it will probably take awhile for our mind to quit racing. We have an early morning tomorrow and will probably get to the NICU about 7am in time for him to be prepped to be rolled into the OR. My parents are supposed to be coming down tomorrow morning to come keep us company in the waiting room. However, there is a chance of winter weather and may force them to stay put.

Let God grace our surgeon with graceful and steady hands tomorrow and let Reid have a speedy recovery in the next few days.

3:30pm: Reid's surgeries are set for 8:20am tomorrow. He has been visited by anesthesia and looks like things are set for tomorrow. I have still not talked to the surgeon but understand that he is stuck in the OR for most of the day. Perhaps we will see him tonight when we are visiting Reid?

His hernias came back out around 2:45 this afternoon and he, again, woke up screaming. The doctor was easily able to get them back in after a dose of morphine.

Speaking of doctors, February is gone and March has arrived. With the new month, a new attending doctor is on the floor. This month is Dr. Moore, who treated Reid back in December. It will be nice to have a familiar face back again.

1:15pm: Reid was wheeled down to radiology to have a couple of preliminary procedures done prior to surgery. First, they wanted to see what Reid looked like so the surgeons could be prepped for tomorrow. They also performed a small procedure where they insert dye into his stomach to confirm if he has reflux -- indeed, he does.

Kristen and I were worried about how he was going to handle this trip downstairs, but the nurse said he did great and was looking all around and was very curious. I guess when you have spent 6 months of your life confined between 4 rooms (2 in each hospital), a change of scenery is probably welcomed.

When his hernias are not out, he is a happy baby and this afternoon has treated him well.

The doctor who is going to perform surgery tomorrow is someone we met back in December when Reid was originally supposed to have his hernia repair. We see him in the hallways and in the NICU all the time and have heard nothing but great things about him, so we are more than excited that he will be the one who will be operating on Reid tomorrow. I am supposed to receive a call from him later this afternoon to discuss the procedures so I have already started writing down some of my questions in preparation. I starting to get nervous about these procedures and I want to make sure that I don't forget to ask something...

Anyway, no news on the time yet, but I am sure I will learn more after the conversation this afternoon.

8:30am: A rough night for Reid last night. His hernias keep coming out and it takes morphine for him to be able to handle the procedure for them to get them back in place. They have been able to get them reduced every time and he calms down enough to fall back asleep and then wakes up screaming again when they come out again. Long story short, they have stopped feeds and have put him on the surgery list. They are not sure when it will happen, but should hopefully be by tomorrow.

We were able to ride a week's worth of good times and now we are to face another uphill battle. He will have his hernias repaired, his nissen and his g-tube placed when he goes under. Unfortunately, we are going to be dealing with the ventilator again and we will have to start the weaning process all over again. But to look at this in a positive way, he came to Egleston in the first place to get his hernias repaired. We will finally have this under our belt and he will be that much closer to coming home.

The slightly good news is that even with all of this pain, his CO2 was 52.

I was supposed to fly to DC tomorrow morning but I will be cancelling that trip. Not a fun way to start off the week...

12:45pm: A couple of updates: his flow was was weaned to 7, his feeds were increased to 29cc per hour and he weighed in at 4.88kg (10.75 lbs). His cheeks are really starting to get chubby!

10:45am: Reid had a wonderful gas of 39 last night. We were told yesterday that if he had another good gas that he would be weaned on the flow again. This time, to 7.

Yesterday, we had a good visit with him, but were a little discouraged with the doctors comments. She revealed that the pulmonologist thinks Reid is going to fail. Yesterday, they started the weaning process of the prednisone steroid and will be weaned twice a week until it is gone. The fear is that this steroid has given great results but we will take a step backwards once it is out of his system. He can't take these steroids forever.

The other bit of discouraging news is that we found out that Reid cannot have a local anesthetic for his surgery and will have to be intubated and given general anesthesia. The local can be used for his hernias but not for the other two procedures (nissen and g-tube). The plan is to wean him a little further on his high flow, intubate him, have surgery, and pray like heck that they can extubate him quickly. We are just enjoying him so much right now with all of the smiles and interaction, and we are afraid we will lose all of this after surgery and unsure when we will have it again.

We have no idea when the surgery is going to be, but we have a suspicion that it is going to be sooner than later. We both think within the next 2 or 3 weeks.

Anyway, time to get our day rolling.

7:00am: Kristen got a pretty nice birthday present from Reid this morning when she called into the NICU to check on him. He managed to sleep from 8:30pm to 5:00am. His O2 was at 32% and a CO2 of 49. Not sure how you can top that?!?

We woke up about 6:15 this morning and Kristen wanted to open her presents. If you don't know Kristen, her birthday is her favorite "holiday" of the year. I tend to think that the day after her birthday, she is already counting down the days until it arrives the following year, so I try My hardest to make it a good day for her. :) This year, I got her the Kindle that she has been wanting and she already started to download her first book for book club. She is now back asleep and I am about to go cook her favorite healthy breakfast: steel cut oatmeal, fresh fruit (strawberries, pears, apples, blackberries, kiwi and oranges) and I am going to fire up the juicer and make her some fresh OJ. We are going to head to the hospital late morning and visit with Reid, check into the hotel that she has been dying to stay at, go shopping and go to dinner.

Anyway... Off to the kitchen I go.

2:00pm: Reid gave us a little scare earlier this afternoon when his temperature was just shy of 100 degrees (37.7 Celsius). The nurse noticed that he was wearing a wool outfit and was a little sweaty, so she changed him and his temperature came down a tad (37.4 c). The nurse was also slightly concerned due to the fact that he didn't act as happy as he has been over the past few days. Not that he was "fussy", but definitely saw a change from the past few days. After a matter of a couple of hours, his temperature was back to normal --- breath of fresh air. Kristen and I have a HUGE fear of him getting sick again and this news almost pushed me over the edge.

Fast forward an hour or so after his temp came back down and Reid revealed the true reason for not acting the same -- a loud toot that startled the entire room and a bowel movement equal to the level of loudness.

And the best news of the day... Reid was weaned to 8 liter flow from 9 this afternoon! His saturations are near 100% and on 45% O2.

Reid, following suit of his techno dad, now has his first domain name at the ripe age of 6 months old. www.reidelley.com For the time being, it is being redirected to this blog but I eventually want to do something fancy with it when I have a little more time on my hands (if that ever happens).

It is getting close to the time where I shut down shop for the day and close the lid to my laptop. It has been a busy week for me and I am ready for the weekend. Tomorrow is Kristen's 32nd birthday and I am ready to relax and enjoy the day with her. If I don't blog again today... please have a good weekend and thank you so much for the prayers you are sending our way!

7:45am: Reid had a good night last night. He slept a good portion of the evening and had a CO2 of 60. Not as good as the two previous nights, but still a good gas for him.

10:45pm: All is quiet in the Elley household tonight. Reid continued to have a good day and enjoyed the visit from his Grandma and Grandpa Elley. My mom was able to hold him today, so that definitely made her day.

We have noticed that Reid no longer has a strong need for his pacifier and it appears that he is now able to entertain himself with other things. Of course, if you stick the thing in his mouth, he will go to town on it, but he doesn't *have* to have it. He seems much more mellow and doesn't get set off very easy. For example, when he had he breathing treatments this evening, he didn't even cry... where as in the past, he would cry uncontrollably. He is very "chill" and seems relaxed. The nurse today put him in his chair and he sat there for hours on end - wide awake and didn't make a peep.

The doctors have made a slight change in his oxygen requirements. Before, they wanted his saturations hovering between 90-100%, but now, his threshold is 95-100%. Subsequently, his O2 levels have jumped up 5 to 10%, but now that we are out of the woods for his eyes, this higher oxygen concentration can be good for him and allow him to focus on growing rather than focusing on breathing.

Well, it is time for bed... big prayers for Reid again tonight in hopes that he can continue his positive trends!

8:00am: Another good night for Reid. A CO2 of 52. We are anxious to see if another wean of pressures is coming his way today...

11:15pm: Kristen and I just got back from the NICU not too long ago. When we got there around 6:30p, he was sound asleep, but as soon as he woke up, we were able to experience what the rest of the NICU staff got to see all day - a baby that was full of smiles and laughs. It was almost surreal and feels like we hit the fast forward button and have a new Reid. We are pinching ourselves as we watch in amazement of how fun it is to have a baby that responds and laughs and coos to what you do. We know all too well that these moments don't last forever in the NICU, so we are going to take today for what it was worth and embrace it!

The NICU had taken some pictures and printed them out. Some were a little fuzzy, but the one below was probably the best one.


Kristen and I got to bathe Reid tonight. Afterwards, Kristen held him and read a book to him until he fell asleep. Keep in mind, the book was in Spanish... it almost put me to sleep as well. :)




The other news for today is that they increased his feedings to 28cc per hour (almost an ounce every hour). Anyway, bed time for us. We are praying hard tonight that Reid will have another good CO2 gas in the morning and continue to be a happy baby tomorrow. Grandma and Grandpa Elley (my parents) are coming in town to see Reid and to help celebrate Kristen's birthday (which is actually on Saturday).

11:45pm: Reid is still a happy camper today and is in his chair and asleep since 10am. The doctor was so excited with his CO2 last night that she decided to wean him further on the pressures/flow to 9 liters. Not that his lungs still don't need the support the pressures give, but his happiness may be attributed to the fact that he doesn't have quite as much flow going through his nose. I imagine this is quite uncomfortable and is starting to feel some relief as he has gone from 16 liter to 9 liter in about 3 weeks. So far, he seems to be tolerating the change from 10 to 9. Two pressure weans in two days!

On Friday, he is going to be weaned on his prednisone steroid. After a meeting with endocrinology, they expressed some concerns of keeping Reid on these heavy steroids for such a long period of time. His adrenal gland (which naturally produces hormones and corticosteroids) can actually stop or heavily reduce the amount of steroids that his body produces on it's own. The body is smart enough to know that when something is being given in abundance artificially, that it doesn't need to produce it as much naturally. I believe they want his body to start producing it on its own again.

On Monday, he will have another wean of his methadone.

6:45am: You know Reid had a good night when you call into the NICU and the person who answers the phone tells you that you are about to hear good news before she transfers you to his nurse. Reid was able to sleep uninterrupted from 10pm to 5am and has a CO2 gas of 49.5!! Our nurse said that all of the other nurses were huddled around looking at Reid as he is smiling so big, cooing and "laughing" when tickled. Unfortunately, we have to wait until this evening to go visit him, but we are ecstatic.

12:00pm: Reid is having a good day today. They attempted the wean to 10 liter flow again ---- this time with success! He is handling it well. The nurse said his lungs sounded much better today than they did yesterday, so with the change in diuretic, it must of helped.

Reid also got a nice bath this morning. He didn't get one last night, so the nurse and the respiratory therapist tag-teamed it and actually gave him a tub bath. He usually just gets a wipe down, so this must have felt good to him. He is now sound asleep.

Kristen asked if the doctor was concerned with his weight loss yesterday... and apparently my math is incorrect as he has already reached 90 grams of his 100 gram goal. They all expected him to lose some weight last night, so this didn't come as a surprise and they are OK with it.

One more wean on the pressure/flow (to 9 liters) and 10 more grams gain before Friday and we will have met our goal for the week...

8:00am: Reid had a very quiet night and slept for the majority of it. His CO2 was 58. He did manage to lose 50 grams, but probably attributed to the fact that he was given a larger dose of diuretic and also had not been fed any milk in 24 hours. He still has a net gain of 40 grams for the week and needs to have reached 100 by Friday for him to meet his goal.

9:45pm: Reid had an unsuccessful attempt at weaning his pressures today. They attempted to move from 11 liters to 10, but had some desatting that made them bump back up to 11. In his defense, it might have been a bad day as there were quite a few changes: started to wean his prednisone steroid, changed out one of the inhalers with a different one, and removed one of his diuretics yesterday. They have since reevaluated his condition and added a heavier dose of his other diuretic (lasix) as it needed to be increased due to his weight gain. He seemed to be a different little boy this afternoon and they will possibly attempt the wean again tomorrow if he has another good CO2 gas tonight. Talking to his respiratory therapist this evening, she thought his lungs may have been a little "wet" due to the lack of diuretic and that may have been the culprit. I do know that after the increase in lasix that he had quite a bit of urine output. Anyway, I leave you with another picture: a little boy dreaming about big and exciting things. So exciting, that he couldn't contain his inner joy while sleeping:


And here is a close up picture of his hair. I have noticed over the past 2 days that his hair is really starting to come back in after being shaved so many times. His eyebrows have also started to darken up a little bit:

And one last photo of his left wrist where his arterial line went bad a few weeks ago. Doctors think that he will have a minor scar:

Oh, and one last thing... they resumed feedings at 14cc per hour. They are expecting to resume full feeds tomorrow assuming he continues to tolerate it. Good night.

6:45am: A decent night for Reid. His CO2 was much better today at 64. And despite 3 large poopy diapers in less than 24 hours, he still managed to gain about 50 grams (half of his goal for the week) and now weighs 4.65kg (10.25lbs). He was a little fussy this morning but the nurse thought it was because he was hungry. His xrays checked out OK and I am expecting that they will start feeds again when the doctor sees him or during rounds, whichever one comes first. A very restless night for me and my stomach gets in knots when Kristen calls in to see how his night went, but I can rest a little easier now. Unfortunately, it is time to get the day started.