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.

9:30pm: Just got done with dinner and I even cooked dinner for tomorrow night while Kristen go her lesson plans done for tomorrow. Monday's are busy days for the Elley's as Kristen has to work the entire day and then we go to the NICU afterwards. So, dinner is ready to go for tomorrow. :)

We got home from the NICU tonight around 7:30p. Reid is in much better shape tonight as the gas and poop are flowing again. The doctors had originally ordered a lot of lab work due to the distended belly and the green/brown substance that was being pulled from his stomach. However, after everything was allowed to settle, things started looking better and his stomach became soft again and the doctors deleted the orders for the labs. He will however, have a follow-up xray in the morning to see if everything looks OK. I would guess by the way he looked tonight, that it will. After a rocky start to the day and after Kristen took her mom and sister to the airport, we did have a good hour or so where we got to hold Reid when he was in a good mood. There may have even been a few half-smiles. :)

Anyway, we are wrapping up the household as the weekend comes to an end. Time for bed and for us to say our prayers that Reid has a good night and a good gas test in the morning. Good night.

2:15pm: Reid's belly is very distended and they think that his bowels may have become a little blocked when his hernias came out last night. They were able to reduce the hernias this morning and hopefully this will allow things to start flowing again. The two glycerin's yielded no results. They have taken an xray and stopped feedings and will take another xray in the morning and reevaluate.

This may be a reason behind the high CO2 levels. He has virtually been fed for almost 2 days with very little bowel movement. This volume puts stress on his lungs and diaphragm and possibly doesn't allow for the bigger breaths needed to move the CO2 out of his lungs. He is in pain and they have went back up a little bit on the methadone.

While this isn't good news, I am praying for this being the cause of the high CO2 levels.

9:15am: Ugh. CO2 was 78 again. We have a pretty fussy baby on our hands as he is struggling to pass a bowel. He was given a glycerin and still no luck. His hernias are out since last night and we are anxious to see what today is going to bring. His oxygen pretty much remains at a consistent 40%.

10:00am: I think that Reid heard the pulmonologist loud and clear yesterday and wanted to prove something else. CO2 = 51. Has he ever had a gas this low?!?

5:15pm: Well, Kristen and I met with the pulmonologists to discuss Reid's respiratory care. We met at 3 for about an hour and was exactly what we thought it was going to be -- their recommendation to perform a tracheostomy on Reid. While his oxygen requirements are manageable, his CO2 levels are not. They feel that a trach would be the best move to help Reid come home and continue to grow. Their fear right now is that Reid isn't going to grow as fast on the high flow due to the extra work of breathing. Staying in the hospital is not going to solve Reid's problem.

Kristen and I have a very adverse feeling about the trach. It is something that we will do if we have to, but is not something that we are going to jump on and wish for Reid. The problem is that there isn't much room to try other things. A high CO2 is not going to be correctable on the support he is currently on.

Instead of agreeing to this procedure, we asked the doctors to devise the short term goals for Reid that encompass his weight gain, his pressures and his gas levels. This way, we have something that is measurable and something to march towards. The problem right now is that every day we come in, we hope and pray that tomorrow is going to better than today. There is something to be said about taking one day at a time, but in the same breath, not making goals is setting yourself up for disappointment. The goals they have come up with:

• Reid needs to be weaned on the pressures by 2-3 liters per week. By next Friday (02.26.2010), he needs to be at 9L flow. By the following Friday (03.05.2010), he needs to be at 6L flow.


• In order to wean the pressure, his CO2 must be below 70.


• If his CO2 is greater than 70 but less than 80, no weaning is made.


• If his C02 is greater than 80, he is intubated.


• He needs to gain 100 grams per week (~3.5oz or about .2 lbs)


• If he needs to have "emergency" surgery for his hernias, he needs to be on or less than 4L flow before the doctors will consider doing surgery with a local anesthetic. Our fear is that he is going to need to be intubated for surgery which is going to cause another step back and further troubles weaning his respiratory requirements.

While we have short term goals, Kristen and I feel our hands are pretty much tied on the outcome. Reid will have to work miracles (which he already has) to not need the trach.

How long will he be on it? No one knows for certain. However, the pulmonologst did say that kids like Reid end up needing this support for about 2 years but there are no guarantees. Reid does have a few things going for him: he didn't have brain bleeds and has a normal, healthy breathing passageway (not narrow or collapsed). It is just a matter of time for his lungs to grow and be able to expel the gas that is currently being trapped. Only God knows how long it will take him.

When we asked if Reid would ever be able to play sports. Probably not. Well, at least not competitively. We can handle this though.

What we are struggling with is how much our life is going to change. The pulmonologist hit the nail on the head when she said that our house would be transformed into a remote/mini intensive care unit. We will, for the most part, be confined to the house as he will be attached to a vent. If we are to leave the house, there has to be very careful planning --- knowing where the closest hospitals are, having a backup vent, having backup oxygen, having backup tubes, etc. We will have a nurse: starting off at 24 hrs a day and slowly transitioning to about 12 hrs a day. Kristen's work will have to change: either quit or work part time. And for her sanity, we cannot see her giving up everything that she has worked so hard to get to. And for me, I cannot ask her to take on 100% of the responsibility - it is not fair.

Long story short, we have some soul searching to do over the next couple of weeks. For some, this is probably a "no-brainer". While it might be best for Reid, coming to terms of how your life (or what you knew of your life) is going to change, is a tough pill to swallow. This is something that I would not wish upon my worst enemy.

Anyway... I am starting to get upset so I am going to end this blog here. Keep praying for Reid and beg for God to help us out!

12:45pm: No changes during rounds.

9:30am: Not a good night. CO2 = 78. He did, however, sleep uninterrupted from 10:30pm to 5am. Waiting for rounds to happen before we call back to see what they plan on doing. Not a good feeling about today...

10:45pm: [Auntie Erica's Blog Entry]- Reid, my lil' nugget of love, has had an awesome day today! First things first- oxygen is hovering around 40% and the latest CO2 was 69. Not much else to report on the technical end, which is a wonderful thing. Kristen and I were there for about 5 hours today with the little guy. He was wide awake for almost the entire visit, except when he took a little cat nap in his Auntie Erica's arms. This was my first time holding him- a little nerve wracking, but made my day! I have been looking forward to this moment since the day he was born. We enjoyed every minute of it. While in his mommy's arms, he had quite an eventful day. First, the Respiratory Therapist, Earl, came to do his breathing treatments- this was quite traumatic for Reidster- he his very hesitant when anyone in a yellow gown and blue gloves come near him! Then after that excitement, the Physical Therapist, Kendra, came to work with him. He loves physical therapy- especially when his mommy gets to massage his tight little muscles with lotion. He was in heaven! He even got to have tummy time in mommy's lap- so special. In addition to all of the activity, his silly mommy and auntie attempted to teach him "Paddy-Cake, Paddy-Cake..." We couldn't quite get the lyrics down- but nonetheless, we all enjoyed a little silliness as you will well see in the video below. We now know the lyrics word for word after a little help from google. Not much else to report on this end...my mom and I are enjoying our short visit here in Atlanta. My mom is praying she starts feeling better so she can see Mr. Reid- she is fighting a cold, so a definite NO go to the NICU. Could there be a worse time to be sick??!!



Be sending good vibes/prayers to Kristen and Chad tomorrow afternoon. They have a much dreaded meeting with the Pulmonologist to discuss the pros/cons of a tracheostomy. While the docs are thinking of what is best for Reid, his parents are having a tough time (as expected) digesting this possibility. Regardless of the next step, the little Rockstar will keep on rockin'! This much is true.

Well everyone in this household has about called it a night, so I better follow suit. We will be sure to update you after "The Meeting" tomorrow- until then, goodnight!

9:00am: Yesterday was apparently an interesting day for Reid. Around 1pm yesterday, during a diaper change, the nurse noticed that his hernias had come back. And when touching them, Reid "lost it" and screamed/cried uncontrollably. The nurse came back later on after he had calmed down to assess them, and again, lost it. After talking to the doctors, they decided to give him some mild sedation and had the surgeon that was already in the NICU take a look. After 5 minutes of struggle, she was able to get them reduced. They had feared that he was going to need surgery. The frustrating part of this whole situation was that the nurse last night did not tell me any of these details. She said he was agitated when they reduced them.

We have noticed that with Reid making improvements, we have started to see a shuffle of nursing staff and get some nurses that do not disclose the information that we, as parents, want and deserve. When Reid is really sick, I feel that we get very well-rounded nurses that have both the medical *and* personal/soft skills. However, I feel that is not the case when Reid starts showing signs of improvement. I am not suggesting that the nurses we have now lack the medical skills - I am just frustrated that it sometimes takes a crowbar to get information out of them. In the case with yesterday, Reid's CO2 was not "around 60" like we had been told... rather it was 67. Which, in my mind, is closer to being "around 70".

Last night was an interesting night for me and Reid too. When I went to visit, he was sound asleep and was hesitant in picking him up and disturbing him. However, about 20 minutes into my visit, he decided to wake up at which time he took a trip to my lap (where he got a new red dragon wubbanub pacifier). About 30 minutes into our visit, Respiratory came in to do their treatment (Reid had a very congested sound to him). They ended up doing a "deep suction" where they slide a very thin, lubricated tube down his nose into the back of his throat to get the mucus. However, in this case, the therapist had a very hard time getting the tube down his nose. In the right nostril, on his first attempt, made Reid start bleeding a little bit. He switched to his left nostril, and with a little struggle, got it down and was able to pull off a lot of crud. Don't think that I want to watch this happen again as it took the nurse and me to hold Reid down while they did this procedure. I don't think that I have ever seen him so upset before.

After the treatment, and after he calmed down a bit, he let loose 4 large toots... and off to sleep he went. Amazing what a little flatulence can do for a person. :) I held him for about 2 hours in total and put him back to bed where he seemed fairly comfortable. However, after I left, I guess he starting getting upset again, but was consolable. His gas, unfortunately, was 69. He was weighed again and had gained about 2 ounces. He is 4.56kg (~10.1 lbs).

I guess we have had a couple of good weeks, so it is only time that we start having some minor issues creep up. They don't say that a stay at the NICU is a roller coaster ride for no reason...

11:30am: I should have waited about 5 minutes to post my blog as Kristen called in with a few new updates. They have further weaned Reid's pressures and is now on 11 liter!! This was an unexpected wean, so we are pleasantly surprised! They have also increased his feedings to 26cc per hour.

11:00am: Reid had an "OK" night last night. CO2 was 60 and was weighed again -- he is now up to 4.5kg (roughly 10lbs). The two previous times that he was weighed showed a drop in weight, so it was good to see that he finally had gained. Looks like the changes they made in his diet have paid off.

Kristen's mom and sister are coming into town tonight. I will make the trip to the NICU alone as Kristen will be heading to the airport. Kristen went in by herself last night, so I will give her the much-needed break tonight.

Not much else is new... which I guess is still a good thing. :)

11:15am: Reid had a good night last night and had been pretty calm this morning. His CO2 was 60 so it appears that he has tolerated the lower high flow pressure well. Not much else to report...

6:45pm: we just got to the NICU and Reid is starting to wake up. He has had a pretty good day so far. O2 is currently on 40% and his sats are alarming at 100 right now. Physical therapy came today to work with him as well. He had tummy time on his boppy and did well. His bowel movements were less than stellar and took a glycerin to do the job. The oil Kristen told me about earlier is actually safflower oil and is given 1.25cc every 6 hours. This supposedly helps deliver extra calories and fat and is usually given to those that are burning excessive calories than they are supposed to. His feedings have been increased to 25cc per hour and they have removed his dose of chloral hydrate in the day and now only gets it at night.

2:15pm: They have weaned his high flow pressures from 13 to 12 liters and don't seem overly concerned with the high CO2 last night. In the notes, it shows that Reid was pretty upset just prior to the gas test and this can definitely skew the results. They have ordered some anti-gas medicine in the event that he needs it, but so far today, Reid has behaved himself. However, yesterday, he was pretty good until about 2:30pm, so we will see if the monster decides to come out again this afternoon. They have also made some dietary changes, but Kristen wasn't too sure of all the details when I talked to her - she thought it was sunflower oil that they have added to his feedings. I will try to get more details on this tonight when we go visit.

Not sure what his O2 was at this afternoon, but when Kristen called this morning, it was at 33%.

11:15am: Something has changed with Reid over the past two days and not sure we know what it is. He cries for hours until he wears himself out so much that he eventually falls back asleep. We thought yesterday we were good again until he had a "falling apart" all afternoon and all evening. Kristen and I think it still has something to do with the 26 calorie fortification of the breast milk, and have voiced our concerns... just not sure what is going to happen. Not sure if his crying had anything to do with it, but his CO2 last night was 69 (the highest he has had in almost a week). In addition, he lost a little bit of weight for the second time in a week --- all of the crying that he does wears him out and burns the calories he needs to grow.

I believe they are still going to attempt to wean the pressures on the high flow today. We should know more in a little while...

1:45pm: Reid had a rough 24 hours and cried our entire visit yesterday. He suffered from a very gaseous stomach and bowels that were not moving. And once those bowels got to moving today, he has been a very happy camper since. :) They had recently switched to 26 calorie breast milk, which makes it a little thicker and probably harder to digest. When we were at Cobb Hospital, he did not tolerate it at all, so the doctors are going to keep a watchful eye on this. But so far today, he seems to be pretty comfortable. We got to the NICU about thirty minutes ago and he is just now starting to wake up. His O2 is at 35% and is sat'ing 97ish. His gas test showed a 57 CO2 and the nurse said that she expects him to be weaned again on the high flow pressures again tomorrow. Not sure if they will go down by one or two liters, but I guess time will tell.

9:15am: Reid had a pretty quiet night -- so quiet that he slept from 9:30p to 5am this morning. With the change in orders, Reid is getting "touched" much less and is able to get some good sleep. He had another good CO2 last night -- 57! There will not be any changes this weekend as our doctor will be out until Monday and she wrote orders for nothing to change (regardless of how well he may be doing).

Talking to the doctor yesterday afternoon, she said that if Reid can keep up his manageable gasses, they will try to wean the pressures two times a week. She also mentioned that if they can get him down to about 5 liters (he is at 13 now), they will probably intubate him and perform the surgeries: bilateral inguinal hernia repair, nissen fundoplication and insertion of a gastric feeding tube (g-tube). And when he has recovered, try quickly to get him back off the vent. I think they feel that if they can get to a more manageable pressure on the high flow, Reid will have stabilized and will handle the intubation much easier.

Doctors are slightly concerned with his weight gain -- or lack there of. He had lost a little bit a few days back and think this is from him burning calories to breathe. They have increased his feeds to 24cc per hour and are fortifying it to 26 calorie (breast milk is naturally 20 calorie) to pack more "punch" without giving him too many fluids. In addition to the extra calories, the fortification gives him other essential nutrients like calcium (which is needed for his bones since he has been on steroids for such a long time).

Not much going on for the Elley family today. The snow is still around and the roads look worse than they did last night. My parents were supposed to come back today from the Cayman Islands and just looked on the web and saw that their flight into Atlanta at 5pm tonight was already cancelled. Sucks to be trapped in paradise, right?!?

6:45pm: Kristen and I just got home from the NICU and the grocery store and we are cooking dinner, drinking some wine (and whiskey... well, I am at least) and hunkering down for the evening. It seems that I brought the snow with me from DC as Atlanta is getting snow right now. It is unbelievable... we are actually getting more than a dusting like we normally get. Looks like we are supposed to get 2 to 5 inches depending on the report you read. The Olympic opening ceremony is on tonight so we will probably turn that on and have a relaxing evening.

We had a somewhat short visit with Reid today as we were unsure of what the weather was going to do. I was afraid of a Friday rush hour on snow, so we headed out about 4:30. Kristen gave Reid a bath today and we delivered his new wubbanub frog pacifier that came in the mail today. His monkey one came home with us for a trip to the washing machine. Reid seems to have had a pretty quiet day... so all is well on this end. I will leave you with some pictures from this afternoon and some pictures of the snow.

Oh... by the way... his CO2 was a little higher today - 62.

Mom and Dad: if you are reading this tonight on your last night of your Caribbean vacation... tomorrow is going to be a rude awakening when you leave 80 degree weather and return to snow. :)

2:45pm: The doctors have made some changes in Reid's care - which I think are definitely a move in the right direction:

* They have weaned his pressures from 15 to 13 liters.

* They want to keep his O2 levels above 40%. Since his eyes are no longer an issue, they want to make sure that they are making him work the least amount to breath. If his lungs can focus on getting rid of the CO2 and growing healthy new tissue, the O2 requirements will eventually go down. Long story short, he can come home on O2, but not on the high pressures that he is currently on.

* They have adjusted his touch times. Currently, it is every 4 hours and they are going to shift them so that he only gets hands-on time when he is awake.

* They are going to try and get him on a day and night schedule. During the day, they will have more lights on in the room. This also means that there will be no "swing time" at night.

* They are talking about giving him his chloral hydrate only at night and see if they can keep him more alert (less sleepy and sedated) during the day.

He also had Physical Therapy today and did well. Kristen is really being proactive about this and I applaud her for her dedication to get Reid up to speed. He has been laying down for such a long time that he is stiff and has troubles doing some of the things that he should already be able to do (ex. holding his head up a little more than he can on his own). If parenting is a full time job, being a NICU parent means working overtime. :)


8:00am: Just when I start to get so upset about Reid's CO2 levels yesterday and my mind starts to go off the deep end and worry about worst case scenarios, he goes ahead and proves everyone wrong -- CO2 of 55 this morning. This is essentially a "normal" gas level, maybe slightly higher. And, in addition to hovering between 30% and 35% O2 all day yesterday, he was able to maintain that level throughout the night. Amazing.

I am still in DC and hopeful that I am going to get home tonight. They have announced that Dulles is open, but have yet to announce that Reagan National is open --- which is the one that I am flying out of. Looking out my hotel window, the roads actually look good, so my fingers remain crossed. I have included some before and after photos:

9:20am: Reid had a high CO2 last night - 68. However, everything else seemed to be pretty good - he was calm, slept well and his O2 was in the 30-35% range. I am assuming that with the high gas, there will not be any adjustments made today. Ugh.

9:10pm: [Kristen's Entry] Reid is having a good day today. He hasn't been fussy at all --just lays in his crib, looks at his balloons and sucks on his beloved "Wub-a-nub". :) He did about 45 minutes of physical therapy today and seemed to really like it--he was so relaxed he fell sound asleep and had a very stinky poo. I learned how to roll him over on his side and stretch his torso a bit. He's not strong enough to stay rolled to one side yet, but he'll get there. He brings his hands to his face or chest while on his side (which according to the PT is very appropriate as it is a form of self-soothing), and he looked very comfortable so I think once he gets stronger he will really like it. We are supposed to roll him to each side a couple of times each visit. We also sat him in a seated position and helped him hold his head up. Reid did so well. He tried so hard to keep his head up--this was evident from the head bobs--but gravity won each time after only a couple of seconds. After laying down for the last 5 months, I'm sure sitting up for any amount of time is simply wonderful. Chad and I are worried that he looks up too much--he is fascinated with the ceiling lights and doesn't like to take his eyes off of them for very long--but the PT said this was normal for him since he's been laying down for so long. It's simply a bad habit that we need to break by making sure we always talk to him at eye level and put his mobile and other toys in front of him, not above or behind him. I was able to hold him for about 30 minutes. He fell sound asleep and then woke up fussy b/c he had taken yet another stinky poo. By this time it was time for change of shift so I said my goodbye's and enjoyed yet another 5 star meal in the Egelston cafeteria. If I never eat a bag of pretzels, a chicken sandwich and a Rice Krispie treat it will be too soon. Reid is now up to 24cc of milk which is being fortified with two different types of fortifiers and he's handling it well. In addition, all of his medications are now oral so there is talk about removing his central line at some point. The doctors are not in any rush to do this, but if there is not a need to keep it in then they won't as it can be another source of infection. His sats are remaining steady at 45%-50% oxygen and I am crossing my fingers for another night of a good CO2. Maybe if tonight's gas is good they will wean the pressures on his High Flow to 14 liters!

6:45am: Reid had yet another good night and a CO2 of 57 - the best he has had in about 2 weeks. He has discovered that his bed is no longer the only place he can sleep and gets fussy after he has been there fora little while. In fact, he slept almost the entire night in his new vibrating seat that we brought in over the weekend. I think he enjoys the change of position.

Anyway, about to board the plane and wanted to get a quick blog out there before I took off. Hopefully we will see another wean of the high flow again today --- will update you later after the doctors make their rounds.

12:15am: Why am I always up so late the night before I head to DC? Ugh. I have to get up in about 4.5 hours, so I will be nice and tired for my flight - that's for sure. Should be an adventurous visit to DC with all of the snow they have had... close to 30 inches.

Anyway, not much to report tonight. Kristen and I had a good visit with Reid. Tonight was the first time that I picked Reid up, put him in Kristen's lap, changed his diaper, his clothes, and when we were ready to leave - put him back. We usually have the nurse help us with all of these tasks, but I requested that we do it all on our own tonight... it was nice that we could do 100% of it on our own. He seems a little easier to keep happy and his saturations seem to be fairly steady during touch times.

I will leave you with a couple of pictures of the outfit I picked for him (take note of the little ears on his hat):

3:00pm: Reid has had a fairly agitated day but is still on about 45% O2. After reassessing his weight, they have adjusted some of his meds and feel that they may have weaned the methadone a little too quick. There is no exact formula for weaning it and they have to take it slow and monitor how he reacts.

He was to get clear IV fluids to replace his hyperal, but they have since decided not to as they don't want him taking on any extra fluids that he doesn't need. His current weight is 9lbs 5oz and they want to get "real" growth and not just a baby pumped full of fluids. They have subsequently increased his feedings to 23cc/hour.

No weaning on the high flow today. While his CO2 gas was probably a "wean-able" number, they want to take it very slow.

10:00am: Reid had another good night. His CO2 was 60 (slightly higher than yesterday, but still good for him). Not much else to report, so I will keep this post short. :)

6:45pm: We had a good visit with Reid today. We brought in a bouncy seat for him to check out and he seems to like it pretty well. We put him in it around 3 and he was still in it when I just called to check in on him. He is currently on 45% O2 and they weaned 1 litre today on his pressures. The big talk during rounds today was how well his CO2 gasses have been. Hopefully with the change, we will still continue to see good numbers tonight. They also increased his feedings to 20cc per hour. Tonight, his last dose of his antibiotic is administered and his hyperal is finished. Since there is now nothing else going into the central line, they will keep a flush running to keep it from clotting up in the event they need it later on. He has made some very small baby steps over the past two days and the doctors seem to be pleased with the results of the prednisone.



10:30am: Reid had another good night last night. His oxygen hovered in the 25-35% range and had a CO2 of 58. Rounds have not been done yet, but talking to the nurses, we are likely going to be weaned again on the methadone and possibly a weaning on the pressures on the high flow. Since he is currently maxed out on the flow, this will be nice to have some wiggle room in the event he needs more support. I am guessing with the small progress we have seen over the past two days, this is most likely a result of the prednisone. Kristen and I are trying to make our way to the hospital soon and will post later this afternoon. We actually brought our camera to the NICU yesterday and took a little video. You might be able to see the amount of saliva that he generates - which is why in the middle of the video you will see me suctioning his mouth (which I think he secretly enjoys).

6:30pm: I dont have much time to write... just wanted to post that our rockstar Reid is down to 25% O2. While he is on his stomach where he breathes much better, we haven't seen this in quite some time.

6:30am: I woke up at 4:30 this morning thinking that I should probably call and see what Reid's CO2 was... but I couldn't make myself pick up the phone as I was too nervous. So I drifted back to sleep and had a dream that his CO2 was 54. Then I woke up thinking I should call again... but then I thought to myself, Reid hasn't had a gas like that in a while, so my dream would ultimately let me down. Again, I fell asleep only to dream that his CO2 was 83. When I woke up, the dream had scared me into not wanting to call.... so again, I fell back asleep only to dream that Kristen was still pregnant with Reid and we weren't facing any of these issues. So, when I woke up again, I picked up the phone with much hesitation... and his CO2 was 63 (which would be closer to around 55 if it were arterial blood rather than the capillary that his came from). Not the best in the world... but we will take it.

Time to make breakfast. My parents spent the night at our house and I am taking them to the airport this morning. They are taking a week long trip to the Cayman Islands with a few other couples from South Carolina. Needless to say, we are j-e-a-l-o-u-s!

11:00pm: Whew! The day is finally over with. I took vacation today, but it has felt like anything but. We got into the NICU around 2 this afternoon to have our discussion with Reid's new doctor. Needless to say, I think we were a little caught off guard with what she had in mind. The conversation, which we thought was going to be with just her... ended up being with the social worker, two nurses, the respiratory therapist and the doctor. Dr. G went down the multiple paths of "what if" situations and, to be honest, it was quite overwhelming. There is too much to write in a blog... so I might have to save it for another day. I will say, the conversation was very blunt, and has forced us to think about some things that we were hoping that we wouldn't really ever have to deal with.

So... today was a bad day for mom and dad... but, overall, Reid actually had a pretty good day. When we left the NICU around 7, he was on 35%-ish O2 and had been awake ever since we got there at 2. So, we were able to enjoy lots of smiles - he was a happy baby. My parents came into today today and the stopped by the hospital to pay him a visit --- they enjoyed seeing him as it was the first time in quite a while that they have been able to see him interact with others (i.e. not sedated or paralyzed).

Kristen just called to check in on him and he was at 50% oxygen and sound asleep. Our biggest concern right now is his CO2 levels as he is borderline on needing to be put back on the vent. Please keep him in your prayers and hope that tonight is a good night and his CO2 levels can come down - even if it is just a smiggin'.

Bed time for us. Long day today and glad it is over with...

11:15pm: Neither Kristen or I made it into the hospital today. Our lonely boy had to fend for himself but I think that we both needed a break away from the monotony of spending about 5 to 6 hours of our day driving back and forth to the hospital and visiting with Reid. We rarely have a chance to get things done... so tonight was our night. Kristen headed up to campus around 9 this morning and came home at 3 and worked until 10:30 tonight. I had a conference call with India at 8am and I am just now wrapping up work for the day. So, when we have time away from our normal routine... what do we do? Work.

Reid's O2 levels have gone back up to 55%. Not sure what is going on there, but they started another steroid today - prednisone. He is continuing to take the hydrocortisone, so I am not sure what their plan is for duration or weaning. Guess we will find out more tomorrow.

He had another eye exam today. He is officially out of the woods and will not have another follow up until he is 1 year old. Is that good news, or what?!? That was one of the reasons we went to Egleston - so I guess we can check that off our list of things to accomplish while we are there.

10:45am: Kristen and I went to visit Reid last night at 6:30pm and found Reid passed out in his swing (at that time, he had been in the swing for about 4 hours). He looked very peaceful but noticed that his oxygen requirements had gone up to about 55%. We also noticed that not only was he sounding a little wheezy, but he was also working a little harder to breathe.

We stayed at the NICU until about 10pm. Kristen had been holding him for over an hour, but it was time for us to leave and it was time for Reid to have his breathing treatments (CPT, aerosols, etc). We were anxious to see how much the treatments would help his respiratory condition and a little nervous as to what we had in store for the evening. Before we went to bed, we called to see how he was doing and he was already down to 40% O2. They were able to pull some mucus plugs out of his nose and also took the tube that was going through his nose into his stomach (and replaced it with one going through his mouth). His nose has been irritated and bloody over the past 3 or 4 days now - irritation from the tubes and high flow, so hopefully this will give him a break. They had originally taken the tube from his mouth and put it in his nose to help prevent the massive amounts of saliva that was being generated.

Long story short, his night went pretty well. He slept soundly and they were able to further reduce his O2 to 35%. His gas test showed CO2 levels of 65 (acceptable, but not great).

Tonight, they are going to start weaning the medicine he gets in the evening for his sleeping. He gets Ativan at 8pm to help with some anxiety and helps calm him down. Then at 9pm, he gets chloral hydrate to help him sleep. They think that he really doesn't need them anymore, so they are going to attempt to cut the dosage tonight and see how well he does. One of their thoughts is that the chloral hydrate suppresses his breathing --- preventing him from blowing off the excess CO2.

His feed are at 11cc per hour and is still on hyperal. I would imagine that he would need to get into the 18-20cc range before they cut the hyperal and in the 23-25cc range before he is considered to be at full feeds. Since the hyperal is the only thing going through his central line, once that ceases, they will hang "clear fluids" to drip through the line to keep it open. They will keep the central line in as long as possible in the event that he needs to be on any antibiotics or on the hyperal once again. It is a nice "port" to have access to in the event he needs it. The less IVs that he has to have... not only makes him a happier camper, it makes mom and dad happy too.

Kristen and I have a busy day in front of us, so we most likely wont get to the NICU until this evening.

10:15pm: I have felt a little guilty today as I have slacked on my blogging duties. I have been trying to think of something creative to write, but there just isn't much going on. The only two things that I can think of are that they have gone up to 9.5cc per hour on the feeds and he had his nails trimmed for the first time (he was looking a little girlie recently). O2 is hovering in the 45ish area.

Kristen and I meet with Dr. Gauthier on Friday as she has taken over for the month of February. Kristen met her briefly today, but we are going to sit down with her on Friday to discuss her plan for Reid. Another set of fresh eyes...

11:30pm: We just got back from the hospital and it is time for bed, but I wanted to get a quick post out there before I called it a day... Reid had an adventurous day today and got to take a ride in his bedside swing for a couple of hours this afternoon. Unfortunately, we didn't make it in time to see him in person, but the nurse was kind enough to take a picture for us (the blanket was used to help keep his pacifier in his mouth).



Other things to note for today:

His oxygen has been in the low to mid 40s today.

He received another blood transfusion as his hematocrit levels were down to 33. To help with this, they have pushed his gas tests out to every 24 hours instead of every 12. Next gas test is at 4am tonight.

He has been battling a little bit of a bloody nose for a couple days now. When they moved the tube out of his mouth to help with the salivating, they put it in his nose. The tube, which is a little larger than normal (to help with the venting), has rubbed his nose raw. Poor little man.

His feedings have been bumped up to 8.5cc per hour.

They weaned the methadone again today and I think that it caught up to him a little bit. He was fussy when we got there tonight, but calmed down when he got into Kristen's arms and then threw a fit after he was put back in his crib. It took a little while to calm him down, but I was eventually able to get him to fall asleep (he loves his head to be rubbed).

Other than that... a pretty uneventful day.

7:45am: Reid had a good night. His CO2 levels came back down to 54 - which may be a few points higher than if it were taken from his arterial line. His O2 hasn't varied much and was at 38%.

Kristen is on her way to work this morning, so I have a quiet house to get some work done. This weekend seemed fairly productive and I feel somewhat rested - more so than I normally do on Monday mornings. I was able to get our 2009 taxes done last night and even had time to pop in a movie before bed. We are getting a decent amount of money back again this year, so it might be time to remodel the two upstairs bathrooms. You know me... when I run into money that I am least expecting, it seems to burn a hole in my pocket. :)