10:00pm: We just got back from the hospital and it is about that time when we turn in for the night, but wanted to quickly get something out here. His CO2 this morning was 63 and his excess base was +11 (on the high side), but there were no actions taken in the hopes that he can adjust and correct himself like he had done last week. They further consolidated his feeds to 30 minutes, but he seemed irritable which made them think that they had fed him too much too fast. They backed it down to 45 minutes and every feed they are going to condense by 5 minutes. Tonight, new orders were made to give him 100cc of milk every three hours (previously 96cc) --- so they started back again at 45 minutes and will work their way down to 30 minutes (hopefully) by end of shift. His stomach can grow and stretch fairly quickly, but they do want to give him a little more time to adjust.

The nurses arranged for a Baby Buddy to entertain and hold Reid today. It ended up being better than we expected as they were there for about 5 hours. And during lunch time, one of the nurses took Reid out to the garden for an hour. It was a long and busy day for Reid and when we were there tonight, he was irritable and sleepy. After his bath, he feel fast asleep and made it easy for us to leave.

Not much else to report for today. Oh.. actually, he was weighed again today at 6.05kg (13.34 lbs). Anyway, I leave you with some photos from yesterday's visit with Grandma & Grandpa Elley:

10:15pm: I was on the way up the stairs to head to bed and realized that I almost went another day without blogging. How dare I? :)

Reid had a good day today. My parents came in town to visit and were able to spend some time with him alone before Kristen and I got there. My dad, who had never held Reid before, was able to hold him for about an hour and a half. When he told me the news, he had such a huge smile on his face and I knew that it made his day! My mom brought him a bunch of new clothes so it will be nice to get some new outfits into the rotation. She bought him 9 month items, so he has a little more growing to do, but not much. Some of the 6 month clothes that we have now are starting to get a little tight on him.

The doctors further condensed his feeds today and he is now getting his full feed of 96cc (~3 ounces) in a single hour. If he is able to handle this transition (which he has so far today), we imagine that his feeds will be further condensed in a couple of days to 30 minutes. And when we get to this point, they are going to start weaning his flow while he is on 100% oxygen. We are very anxious to see what is going to come of it as we know they are working hard at getting him ready to come home.

The pulmonologists came to visit us this afternoon and they suggested that they want to take Reid to the cath lab to check on his pulmonary hypertension for precautionary measures. When Reid's doctor caught wind of this, there was an astounding "NO" to this procedure. While the pulmonologist has good intentions and making sure that Reid is OK for the long term, our neonatologists are all too aware of the risks of intubating Reid for an elective procedure. The risks of Reid getting stuck on the ventilator and possibly having to be trached are way too high. Maybe this is something they can do later on down the road when his lungs have further matured and when he can handle something like this a little bit easier, but our doctor said it best today --- why rock the boat when Reid has finally began to stabilize?

And last but not least, his CO2 last night was 42 and he weighed 6.015kg (13.25 lbs). Looking at a growth chart, Reid is really starting to get close to the 50% mark for his corrected age of almost 4 months. He has come a very long way in the past month and a half (as you can probably see by his super chubby cheeks)!

1:00pm: I somehow managed to go an entire day without posting a new blog on this site. It must mean that Reid is doing well and not a whole lot of news to report... which is a very good thing! Yesterday, Kristen and I split up the time that we spent at the hospital: she went from 11am to 3 and I went from 3 to 7pm. This both allowed us to get some things done that we have been wanting to get done around the house or work, yet allowed us to spend the entire day with Reid. I think it worked out pretty well as Reid was able to stay awake the majority of the day and have a little more interaction than he typically has. He seemed to really enjoy it as he had a VERY good day filled with lots of smiles. Kristen is good at entertaining Reid, so when I took over at 3, he was starting to get a little sleepy and I think we both managed to have a cat nap while he was in my arms. Nothing better than a good Sunday afternoon nap, right?!?

During rounds today, they made two adjustments: increased his sildenafil (Viagra) dose due to his weight gain (now 5.9kg or 13 lbs) and condensed his feeds - he now receives 96cc of milk in an hour and a half, every three hours.

11:30pm: Reid took another trip to the gardens today and got to enjoy the wonderful weather Atlanta had today. He managed to stay awake 10 minutes this time and then crashed. Not sure if it is the movement of the stroller that soothes him or if it is the peacefulness of outside that makes him fall asleep so quick. It never fails though... usually within minutes of going out.

Last night, his CO2 was a little high - 64. He weighed in at 5.88 kg (12.96 lbs).

The big change for him today was the way they are feeding him. Instead of getting 32cc per hour, they are condensing the 96cc that he would normally get in three hours down to 2 hours. For the first 2 hours, he gets 48cc per hour and the third hour he doesn't get anything at all. The goal will be to get this volume into him within about 30 minutes - about the average for a normal full term baby to get the same volume (roughly 3 ounces per feeding). Not sure how long this will take, but his stomach has to grow and he has to be able to show that the volume his stomach will now consume inside his body doesn't have adverse pressures on his lungs.

Today, Kristen was able to administer Reid's respiratory treatments and we both got a chance to give him his medicine through his g-tube. It is nice to start doing some of these things on our own as soon enough, we will be doing them all on our own when he comes home.

By the way... not sure if you noticed in the picture - Reid doesn't have his cannulas in his nose - Kristen was able to get a snapshot while they were changing them out this afternoon. Wouldn't it be nice he didn't have to have those things in all the time?!?

1:30pm: Only change made in rounds was the weaning of the methadone to .45 cc.

10:30am: Reid had a very quiet night last night. Oxygen is at 50 and he had a great CO2 of 48. His base excess was at +10, which is getting high, so I am not sure if they will be giving him Diamox again to help control this. We will call in after rounds have happened to get a better idea on what the plan is for today.

10:30pm: While I was only gone for two nights, there is no place like home and I am glad to be back. I am going to try to keep this blog short as I am ready for bed, but I did want to get something out there as I haven't written anything in over 24 hrs.

Yesterday, we saw Reid's oxygen hovering on the high side (55-60%) and we were starting to get nervous. Our nurse said she was going to keep a watchful eye on him last night and everything was fine until this morning when he started getting a high temperature (around 101) and a high heart rate (around 200 when his normal rate is about 150). They decided to run all the labs under the sun but nothing has come back (the initial reading didn't show any skewed readings either). They gave him a Tylenol, his temperature came down and they have no chalked it up as him getting too hot. He is hot-blooded like his daddy and doesn't need much to keep him warm...

This afternoon, he seemed to resume to normal and Kristen had a good visit with him. I believe his oxygen in now back around 50 (not too far north of where it has been for the past few weeks). I think we are still cautious about the past 24 hours, but so far, a little sigh of relief.

Talking to the doctor today, it sounds like they are going to make a change in Reid's care. Currently, they are keeping him on as low of oxygen as they can and trying to wean the flow. However, it sounds like sometime early next week, they are going to put him on 100% oxygen and see what kind of weaning on the flow they can do. Since his eyes are no longer in danger of ROP and he will be coming home on 100% oxygen anyway, they are going to see if they can make any progress this way. Some of you may be thinking that being on 100% oxygen is a little crazy since we have, for the past almost 7 months, been trying to get away from that 100% mark. However, in the hospital, they have what are called 'blenders' that allow them to mix the oxygen and normal air to get a desired percentage of oxygen that he receives (in this case ~45%). Since we won't have a blender at home, the only possibility is for him to be on 100% oxygen straight out of the tank when he is at home. Anyway, long story short, we are anxious to see what this will bring us.

Anyway, time for bed. I sign off tonight with my sister and her family in my prayers as they had to unexpectedly say goodbye to their dog today after an unfortunate condition seized the quality of his life. So, tonight, we have good memories of Winston in our minds knowing that he is better off where he is now, and praying for my sister and her family as they deal with his passing. While some people fail to realize it, dogs are just as much a part of the family as anyone else --- and we will miss him dearly! I know I will especially miss the times throwing 'his' ball (that he guarded so carefully) back and forth with him. We love you Winston.

3:30pm: After a CO2 of 63 and higher oxygen requirements (55-65 range) they decided to put Reid back on 5 liter flow. Reid wasn't working harder to breathe, but the combination of the higher CO2 and oxygen requirements point to the fact that he wasn't for the wean. This is a huge disappointment and we feel that our hopes of having him home sometime late spring or early summer have been crushed. We have some questions that we will ask the doctors, but we are again, realizing the severity of his lung condition. It is easy to keep pushing aside how bad his lungs are when we have seen nothing but success and forward movement over the past 3 weeks --- guess this is a reality check for us.

12:45pm: Reid is getting his second shot at 4 liter flow again today. After the repeatedly good gasses, they lowered his flow this morning. Also in rounds, they discussed the probability of him not having methadone weaning side effects over the past few days. They are not confident that he was having withdrawal and not sure his dose should have been increased yesterday to compensate, but were hesitant in doing anything about it today since they did wean his flow. I would guess that if he handles the wean today, that they will consider weaning his methadone again in the next day or two. Kristen was heading into the NICU when I spoke to her around noon and will spend the majority of the afternoon hanging out with the little man.

5:15am: Just wanted to get a quick post out there before I head to the airport and get my day started. Last night, Kristen and I had a good visit and gave him a bath. He seemed to tolerate it very well (not typical for him these days) and had a happy and well-scented baby when done. He drifted fast to sleep... and unfortunately too fast as they still needed to give him his breathing treatments. So, around 10pm, the respiratory therapist came in and gave Reid a rude awakening that took him a good 30 minutes to finally calm down and fall back asleep. He didn't cry too much, but seemed to be fighting against sleeping and I had to sit there for the good part of those 30 minutes holding his beloved wubbanub pacifier for him. Ugh. Anyway, we finally made it out the door and he didn't wake up until this morning when they got his blood gas. CO2 = 57.2. Hopefully today can be a good day for him and not be so irritable like he has been the past couple of days. Kristen will probably spend the majority of the day with him this afternoon.

12:00pm: No changes for Reid during rounds. He has had a difficult morning and cried uncontrollably for about 20 minutes. They have subsequently went back up on the methadone dose that they previously weaned the other day. Seems like maybe they have weaned by too much or too fast? And unfortunately, the doctors were rounding during this meltdown and decided to not wean his flow even though he had a great CO2 gas of 52 this morning. They will reassess later this afternoon to see if he can calm down with the slight increase of methadone. Poor little guy!

11:15pm: One last post before I call it a night...

As we were driving away from the hospital this evening, Kristen (in a sad voice and feeling depressed since we just left Reid) asked me if I thought Reid knew who we were. She always has the hardest time leaving him and is always curious as to what goes through his mind. Are we just two average people that happen to pop in and out of the room, or are we something more than that? I told Kristen tonight, "of course he knows who we are - he has known since the day that he was born that we were his parents".

Kristen called in to check on Reid and I guess he had a "falling apart" right after we left at 6:15 and took awhile to calm down. We typically leave during shift change and we have always thought it was the lack of attention that causes Reid to have these melt-downs (due to the fact that the nurses are busy giving report and not paying attention to him). However, this time, Reid's nurse was about to come into his room to do a few things when we were leaving, so we knew Reid would be occupied for a little while as soon as we left. So, even with a nurse to keep him occupied, Reid still got upset.

Long story short, after she got off the phone, I reminded Kristen of our conversation we had as we left the hospital about him knowing who we are. "So, you still don't think he knows who you are?", I asked her. She thought about it for a minute and quickly got a big grin on her face. :)

Reid had another weight gain tonight - he weighs 5.675 kg or 12.51 lbs.

8:00pm: A pretty quiet day for the Elley's. Reid had a pretty uneventful night last night and had a CO2 of 57. He has been fairly irritable today and had a Baby Buddy come in this morning to hold him. If his pacifier wasn't being held in for him, he was all screams. His bowel movements haven't been all that great over the past few days, so I think he has some gas he is dealing with. In addition, we think that he is dealing with some withdrawal issues on the methadone. Feeds were increased today to 32cc per hour.

9:00am: [Kristen's Blog] Mr. Reid only lasted a couple of hours on 4 liter flow the other day. When the night nurse arrived she noticed that he was working harder to breathe, as was evident from his stomach retractions, so the nurse practitioner decided to bump him back up to 5. Chad and I were disappointed but we are hopeful that we he will come back down to 4 next week. His gas this morning was 52.6 and yesterday his gas was at 51. And, Reid continues to gain weight, even on the 22 calorie breast milk! He now weighs 12.4 lbs! (5.620 kg).

We took him outside yesterday since it was such a beautiful day here. We stayed out for an hour, and would have stayed out longer but the O2 tanks only last so long. He slept almost the entire walk except for the last 5 minutes. At that point he opened his eyes super wide as if to say "Where am I?" :) After the walk, we came inside and Reid and Chad had some bonding time and they both were all smiles. We stayed at the hospital for about 3.5 hours and then headed out of town to go to Chad's parents' home. While it is a short getaway for us, it is long overdue!

I spoke with Reid's nurse at 6:30 this morning and he had a fairly good night. Once again, his G-tube came out (for those keeping track, this is the 3rd time this has happened) but the surgeon was able to put the tube right back in and this time, there were no field trips to radiology. I guess this is because it's evident that the stomach has attached to the abdominal wall. What we want to know is whether or not we will have to make a trip to the ER every time this happens at home--surely not! We are both anxious to learn how to insert this tube and how to take care of the G tube in general. After all of that drama, Reid was worn out and was asleep by 9:30 pm and slept until 4:30 am.

We will leave SC late this morning and perhaps go to the outlet malls and buy Reid some new clothes--he doesn't really need any but it makes us feel good :) We are hoping to go for another walk this afternoon since it is supposed to be another gorgeous day!

Happy Saturday everyone!!

6:30pm: Guess who got weaned to 4 liter flow? This guy:



1:15pm: Reid had a good CO2 gas of 42 this morning, but was probably closely related to the change in diuretic that they are giving him. Now that they are giving him lasix every other day (instead of daily), they are supplementing it with diamox. Diamox is probably used for many other reasons than what Reid is using it for, but for him, in addition to it being a diuretic, it is also helping with his excess base (and possibly his CO2). I believe the plan is to eventually get him off the lasix and onto this drug.

The only change they made in rounds today was the calorie reduction of his feeds. They have now moved down even further to 22 calorie.

Kristen just took off and is on her way to the hospital to visit Reid. She is hoping to be able to take him outside again...

11:00pm: The big news of today is that the sildenafil (viagra) has done a number on Reid. This afternoon, he had an erection for 3 hours (4 hrs is the cutoff time where they start to get concerned and have to call the urologist). And again, tonight when we called in around 11, he had another one. Maybe now that he is feeling better... he is REALLY feeling better? :)

Other news - he is 5.51 kg or 12.15 lbs. Comparing him to his last chart 2 weeks ago, he has made some really good gains on his length and weight. In fact, his height is now probably in the 45th percentile and weight in the 15th percentile (for a preemie born 3 months too early). Two weeks ago, he was around the 40th and 10th --- so maybe an increase in 5%? Hard to be exact when looking at the chart below:



12:30pm: Well, a little bit of news that we weren't expecting... they decided not to wean Reid's high flow today -- and in fact, it doesn't look like they are going to do any weaning for the next 4 weeks. The reason is that they want to get him off the hydrocortisone and the methadone before they start weaning any of the flow again. I think that it makes sense (to not push him too hard), but in our eyes, we see progress when we see lower numbers in his respiratory care. So, to know that we are going to be in a holding pattern on his flow for the next month, it is a little frustrating.

They have also changed his lasix (diuretic) to every other day instead of every day. His base excess was high today (+11), which can be caused by loss of electrolytes.

They want to talk to us about getting all of Reid's immunizations out of the way. We will find out details later.

Kristen and I are starting to feel a lot of pressure to be at the hospital for extended periods of time (pressure we put on ourselves). This was never the case when he was very small or very sick, but now that he is interacting with us, we feel the responsibility to be there for him and entertain him. The problem is, work gets in the way and the hospital is so far away from us (it is usually a 45 minute commute each way). We try our hardest to be there as much as we can --- and I guess that is going to have to be enough. We just wish we could spend every second with our little boy.

10:45am: A fairly uneventful night for Mr. Reid. He fell asleep at 8:30 last night and slept until 2am when he woke up crying. One of the side effects of the morphine/methadone weaning is sweating (and boy does this boy sweat)... and when this sweat cools off, he gets cold. In addition to the weaning of the methadone, the fact that he has chronic lung disease also causes some of this sweating (from work of breathing). He finally fell asleep, and then woke back up at 5am with the same problem. Poor guy!

His CO2 was 58.5 today and we are waiting on the doctors to make their rounds to see what else will be changed.

3:30pm: No major changes for Reid today. He had a good gas and we were hoping that he was going to be weaned on his flow, but right before they did rounds, Reid had a "coming apart" and was working a little harder to breathe and the doctors didn't want to chance it. It is unfortunate that they saw Reid in this condition as he has been acting normal all night and this morning - and even after they left rounds. We also think that they are wanting to see several good gasses in a row since the previous couple of days CO2 readings were slightly elevated.

Not sure if we have blogged about it before, but Reid has started getting Mylicon during the day to help with some of the gas he has been having. After his nissen procedure, he doesn't really have the capability to burp or be burped. Pair this with any indigestion he may have from his feeds, he can become a not-so-happy camper. Last night while we were visiting Reid, the nurse attempted to give this through his mouth and both Kristen and I jumped up and told her that it was supposed to go through his g-tube. The orders say "PO" which normally mean orally, but the doctors alluded to the fact today, that if a patient has a g-tube, it should be common sense to not put this in his mouth. Long story short, orders have been specifically written that ALL feeds and medicines are to be given through his g-tube. Not sure that the mylicon (since it is such a small dose) would have done anything wrong if given orally, but Kristen and I are so scared about the possibility of him refluxing again to where this causes another infection. We are glad we were there when this happened...

Also, we have seen that some nurses are waking Reid up to do their "touch time" - like change diaper, get temperature, get his blood gas test, etc. We are concerned with this as we feel that Reid should not be interrupted while sleeping. Sometimes this causes him to get uncontrollably upset; sometimes he cant fall back asleep. We had this brought up in rounds today, and subsequently, they have made orders so that he is to not be woken when sleeping, and for all touch-time activities to be done while he is awake. I think the one caveat is that if he has slept for more than 8 hours, it is OK for them to wake him up.

Reid is now officially on a diet. He has had some great gains over the past few weeks and I think they are concerned that he is packing on too much too quick. A lot of times when babies gain this kind of weight it is not lean muscle mass - maybe more fat or water weight - and is not the growth that promotes lung development. As of 6pm tonight, he will be moved to 24 calorie feeds instead of the 26 calorie that he has been getting. For so long, they were concerned with his weight gain and were doing anything they possibly could... now it appears that he is fine and will be backed down to something a little more close to normal. They still want to "grow" him quicker than normal, but not so fast that it is detrimental to his lung health.

Kristen and Reid have a meeting with the physical therapist on Thursday to learn how to give Reid a "developmental bath". He has been getting visits from PT 2-3 times a week and he has, developmentally, grown leaps and bounds in our eyes. It is amazing the changes that we have seen over the past few weeks, so anything that will help in Reid becoming that much closer to someone his adjusted age (3+ months), we are very welcome to the ideas.

10:30am: Just a quick update this morning - we are still waiting for the doctors to round to see if there are going to be any changes. Last night, he was weighed at 5.435 kg or 11.98 lbs. There is a little debate about this as the nurse weighed him three different times and got a different weight every single time. The weight that was recorded was the lowest of the weights, so I guess we will see what numbers he shows next time he is weighed. Nonetheless, he had put on some weight. His CO2 last night was 57.

12:00pm: Not much going on in Reid's little world today. He is still fascinated by his mobile, so we are hopeful that it will keep him entertained until we can get there tonight after work. Monday and Wednesdays are hard for us to get there before 6:15, so Kristen has requested that the Baby Buddies go visit Reid this afternoon. These are volunteers that will spend some time with your baby when you cannot make it in... they will play with them, hold them, etc.

Today, the doctors have increased his feeds to 31cc per hour, weaned his hydrocortizone steroid and will attempt another weaning of the methadone sometime early to mid this week. His flow hasn't been touched and is still on 5 liter. We feel that they are trying to get Reid off of a lot of the drug/steroid help so that they can really have an idea what is going on with Reid's health and lung development. If they wean too many things at one time, they have a hard time judging what caused what. So, if we can get down off of the steroids and sedation (methadone), it will be up to Reid and his continued growth to determine when he comes down and eventually off his oxygen support. His CO2 this morning was 63.

10:30pm: [Kristen’s Blog] After running a few errands we made it to the hospital today around 3:00 -- just in time for our second stroll outside with Reid. Since it was cold and a bit misty outside, our outing was short but we made the most of it. This time around we put Reid in his carrier and he seemed to like that much more rather than putting him directly in the stroller. As soon as he was situated in the carrier he wouldn’t stop smiling (as you can see in the pictures!). We took two laps around the Egelston gardens and then decided to head in. Reid’s leads were not picking up well and while he looked and acted just fine, the low saturation numbers made mom and dad nervous. Plus it was kind of chilly and I think all of us were ready to return to the warm indoors. After we got Reid settled back into bed, Chad and I had to leave for about an hour because there was a surgery going on. When we returned, I got Reid out of bed and was able to hold him for about an hour and a half. He snoozed for a bit in my arms and when he woke up he was all smiles and ready to play. He tries so hard to lift his head up and keep it in place -- he literally wears himself out practicing. Towards the end of our playtime I read Reid a book his Aunt Shannon bought him: “All I See is a Part of Me”. I wish we would have recorded this but he was all smiles the entire time I read the book. Every time I turned the page his face would just light up. The nurse, Chad and I all got a kick out of that and I am hoping he will love reading as much as I do! Afterwards we put him back in his crib and the nurse kept him occupied while Chad and I left. We think that he tends to have meltdowns in the evenings partly because he’s tired and partly because he’s been entertained for 4-5 hours and then when he’s suddenly left alone he gets mad about it (who wouldn’t?!). So hopefully this new tactic worked -- we will find out tonight when I call to get the evening update.

Reid gained 20 grams last night and his CO2 was 60 this morning. They did not do any weaning this weekend so maybe this week he will get down to 4 liters. Also, the fungal infection on his neck seems to have cleared up so hopefully that will continue to stay away.

Well, it’s back to work for me tomorrow. I thoroughly enjoyed my week off and hate to see it end.

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.