10:00am: Not much to report today... we are just hanging tight until surgery on Tuesday. Thought I would post a couple of pictures from the past couple of days. The first one is him getting a respiratory treatment. You can tell we are in an ICU with older kids when the masks themselves are funny little creatures. :)



NOTE: after several comments Kristen has received this morning in regards to the second photo - no, Kristen is not pregnant. :)

4:30pm: I have signed the consent forms and it is now official. Reid is on the books for Tuesday as an add-on so we really aren't sure as to what time. He will be intubated, have an IV placed and will hopefully have his circumcision done at the same time as the trache. Very nervous about our decision but I know it is right. We met with the anesthesiologist as well as one of the surgeons and have walked through the game plan. Guess we are as ready as we will ever be.

On a different front, Reid had a good CO2 this morning of 42. They increased hid lasix diuretic and discontinued the one other diuretic he was on. The methadone wean is going really well and he gets the minimum dose every 12 hrs. Before we will know it, it will be gone. Just nice to see some of these drugs getting out of his system and have noticed that he is more awake during the day which affords for a few more smiles, giggles and coos along the way.

We have a fairly quiet weekend planned and looking forward to doing much of nothing and hanging out at he hospital with Reid. On the way to see Reid today, we noticed the holiday traffic and it made me a little jealous that we can't really do anything, but at the same time, it is OK since we are starting to see the light at the end of the tunnel for Reid coming home.

Anyway, we hope that everyone has a safe and happy Memorial Day weekend!

9:00am: I am a 31 year old man and cannot remember the last time that I cried myself to sleep. Last night was one of those nights.

The past few days have been tough and when we went to bed last night, I think it all came crashing down on me and the reality of it has started to sink in. I try to keep thinking of another possibility of how we can avoid this procedure, but all roads lead to the decision that Kristen and I have made. I keep hoping that the fog will lift and it all turns out to be a dream, but I am only kidding myself.

The last time I have felt this upset/emotional was the day my Uncle Jim passed away a few years ago. And as I type up this blog, I am wondering how I can even start to compare this procedure to a family members death?!? But I guess for Kristen and I, this is the death of the dreams we had of bringing home a healthy and normal baby boy. I feel like the past 9 months should have prepared me for what is forthcoming, but I can't even begin to put this into words of how bad this has my head spinning.

8:00 pm: Kristen and I met with the "team" which was composed of the attending pulmonologist, the resident pulmonologist, assistant nurse manager, physical therapist, occupational therapist, student occupational therapist, house supervisor/patient representative, social worker and the case manager at 3pm this afternoon. We believe word had spread, either by word of mouth or via this blog, that we were unhappy with multiple things hence the House Supervisor/Patient Representative. The pulmonologist thought it was in Reid's best interest to have a trache as Reid's development (physically, mentally, etc) was being stunted due to his weakened pulmonary system. The fact that Reid has to compensate for his poor lungs (either by sleeping to recover from the fatigue he endures when trying to do things other than breathe, or by other organs in his body compensating for his high CO2 levels), he is at a disadvantage, and as bad as Kristen and I do not want the trache, it is going to be the best thing for him. This is going to be a huge undertaking for us and I am still not sure we know what we are going to get ourselves into, but at this point it is about giving Reid the support he needs and the environment he belongs in. Spending nine months in the hospital, regardless of age, is not good. As much as our nurses have given Reid, it will never be as much as he will get from us at home.

We are meeting with the trache educator tomorrow and will give our final thumbs up to the procedure on Friday. From there, we will meet with the ENT surgeons to discuss the procedure and will most likely have it done before the end of next week. After surgery, he will spend 7 days in the Pediatric ICU and on the last day, he will have his trache changed by the surgeon. During this week, Reid will be fairly sedated to not only keep his pain in check, but also to prevent him from grabbing at his new 'appendage'. After a successful change, Reid will then be moved back into the TICU where we will probably spend about 4 weeks getting trained and accustomed to the new way of life for Reid. Our philosophy right now is that the sooner we get it done, the sooner we come home.

Life is not going to be a walk in the park and we are going to have a huge lifestyle change. Not that having a new baby at home is not a lifestyle change in itself, but EVERYTHING is going to be different. At first, we will probably have a nurse at our home 24 hrs a day and this will probably be another challenge. We are going to have very little privacy or alone time, but whatever makes the transition home easier, we are all for it. And as much as we hate to ask, we are going to need lots of support from our friends and family over the next few months.

The past few days have been stressful as we have been trying to wrap our brains around this. I think we have made our decision and we are slightly more at peace with what has been put in front of us. I still question why God did this to us and I hope that one day we can figure it out, but right now, we are still very angry about the cards we have been dealt. We are weary about our decision, but we are more than ready for Reid to come home. The trache will be a means to an end and the start of our new life. The day that he is running around and breathing on his own will make this decision well worth it.

2:30pm: They bumped Reid up to 5 liter flow and his work of breathing has improved. His respiratory rate has dropped by about 10-15 breaths per minute and seems to be more comfortable. I believe the doctors and respiratory therapists are really getting an understanding of what Reid needs and Kristen and I are preparing to hear the worst news tomorrow.

If we decide to have the tracheostomy done, it seems that he could have it within a week's time, taken to the PICU for a week and after they did the first trache change, he would be moved back to the TICU for about 5-6 weeks. During that time, we would be trained and educated about the care needed for the device, medical equipment would be set up at home and then he could come home.

We feel so alone and mad at the world. The thought of us not being able to hear Reid coo or giggle devastates us. Also frustrated that if we end up down this path, we should have done this 3 months ago and saved some of our time in the NICU.

A bad day for the Elley's.

12:00pm: Seems like we are only taking steps backwards since we have been moved to the TICU. The issue I have with this is that I don't necessarily think that it is Reid that is taking steps backwards because he looks and behaves the same as when we were in the NICU. I think it is the doctors and nurses that are giving Reid more respiratory support than he may need because they just don't know how he operastes. Today, they put Reid on 4 liter flow because he was de-satting into the upper 80s last night. However, the interesting thing is that they will not touch the O2 and keep it at a steady 55%. The part that is frustrating is that when he comes home, he will be on 100%. So, I would think that the O2 should be pushed up when he is de-satting, rather than increasing the flow. It isn't getting us anywhere.

Kristen and I have our meeting with the pulmonology team tomorrow afternoon at 3. I feel as if they are playing their cards so that they are going to force Reid to have a tracheostomy. I called this meeting with the doctors so that I could complain about some of the care that we have been receiving, but I have a feeling that it is just going to get turned back around on us and we will be back to square one again.

I am still waiting for the day when we catch a break...

9:45pm: Kristen and I just got home from spending the entire day at the hospital. While we missed out on being able to enjoy the nice weather outside and get some things done around the house - we had a really good visit with Reid. He was in a much better mood today and we enjoyed watching him kick and flail around in his crib and nap in our arms. The best part of today was listening to him laugh - they are coming more from his belly and he enjoys getting a reaction out of us.

The nurses and respiratory therapists today (both day and night shift) were really good. They were personable and seemed to know what they were doing. Now if we could only keep it this way...

We think the only thing that was changed today was the further wean of his methadone. It is the same dose, just giving it to him every eight hours rather than every six. The reason I say that 'we think' is that we aren't really informed with any of the changes that are really being made. I asked the nurse today to set up a meeting with the doctors/pulmonologists this week so that we can get on the same page as to what their expectations are of Reid's progress and also so we can let them know what we expect out of the care that is given for Reid. We have a list a mile long of all the things that have gone wrong over the past week, so I am sure it will make for an interesting conversation. Hopefully we can have this conversation early this week.

10:15 pm: [Kristen's Blog] If I hear the question: "Is this normal for Reid? This is my first time with him and I don't know him at all" one more time I think I will burst into tears. I'm not sure if today has been tougher on me or Reid but either way we are both exhausted. I'm not sure what is difficult about following a schedule and feeding a baby, but Reid's feeding schedule has been messed up twice now. Couple that with the fact that he is flooded with water through his nasal canulas at least 4-5 times a day which makes him lose it and then leaves him exhausted (who enjoys getting water up their nose?), and a nurse tech who asked ME if she had connected all of his tubes correctly because she was unsure of how to do it. This is the same nurse tech that for some reason could not walk into the hallway and tell the secretary that she was unable to take a phone call, but rather shouted it over Reid's crib into the intercom while he was sleeping. She then proceeded to say: "If I am not loud enough, they can't hear me".

The final straw today was when it took not one, but two girls (I say "girls" because I have no idea if they were nurses, nurse techs, secretaries, or volunteers) to go through my frozen breast milk and make sure it was labeled correctly all the while laughing and making comments about how much milk there was, and how I was a "machine", and "holy cow! look at all of this milk!" Really? You work in a Children's Hospital and I don't even know your name and you're going to make comments like that? Give me a break.

So needless to say, Chad and I are less than impressed with the TICU. His first comment to me today was "what kind of circus is this?". And to top it all off Reid is back on 3 liters. We are actually taking steps backwards now. Great. Apparently the nurse drew a gas this morning after Reid had just had a meltdown and what a shock, it was high (69)! So they pushed him from 2.5 to 3 liters and at 10 am repeated the gas. This time, he was sound asleep and low and behold it was a beautiful 55. Hopefully tomorrow if he has another good gas he will go back to 2.5. And the poor baby is back to daily gases, rather than just twice a week so that the doctors can get to know him better and see how he trends. I really don't understand this and strongly doubt that daily gases are necessary. His poor little heels! And honestly, this whole water up the nose deal needs to get corrected. I've requested that they bring in the NICU's high flow set up so we'll see what happens. Several times today I've just wanted to say, "can you just call the NICU and ask the nurse or respiratory therapist about Reid, they know him really well".

We left Reid tonight around 8:30 and he had just fallen asleep. I pray he can sleep through the night and regain some of his energy for tomorrow. He had a traumatic day and I can't remember the last time I saw him cry as hard or as long as he did today.

I hear there is a free bed open in the NICU. Any takers?

10:45pm: Kristen spent about 8 hours visiting Reid yesterday and was given some company by our friend Alison. Ms. Alison spent the entire day at the TICU and they had a fun visit except for when Reid turned blue. We are not sure what caused this (it happened when the RT was doing something with his circuit) but it did cause for some brief excitement. Kristen has really become self-sufficient with Reid and even did the uber-unthinkable task of bathing Reid by herself. For those of you that haven't witnessed a Reid bathing time, this is easily a two or three person task. I am proud of her!!!

Reid had some ups and downs yesterday in terms of his oxygen support. He started the day at 2.5 liter flow and was moved to 2 since his sats and work of breathing looked so good. But apparently, Reid had a meltdown (don't know why but we think it was because he started getting upset and if you don't control the situation right away like they did in the NICU - he loses it. Maybe they didn't get to him in time???). During this chaos, they bumped him up to 3 liter flow, eventually back to 2.5 and then somehow ended the day down to 2 liter.

Kristen thought he was working hard to breathe last night but no one seemed to agree with her. His CO2 this morning was 60.9 (a good normal number—for Reid)!!! So, we will take things day by day and see how this new adjustment goes.

Developmentally, Kristen has noticed a few new things yesterday: grabbing the animals on his mobile and bringing them to his mouth, and when he is on his side, he will grab for things that are within his reach. Occupational therapy was there yesterday and they still think that he is a little past three months development but still has some difficulty with some of his motor skills. Sitting up and doing things
for an extended period of time just wears him out. He tends to get cranky fairly easily and usually needs a nap afterwards. His brain tells him that he can do these things, but his lungs tell him to slow down. We will get there one day.

Today is my last day in DC and will catch a 5pm flight to head home. Unfortunately, Kristen is picking me up and my arrival time is right around bath time for Reid, so I may be hanging out and having dinner there until Kristen can come get me. It really isn't a big deal, but told Kristen to do whatever it took to keep baby and mom happy.

Anyway, back to work I go. Here are a few pictures that Kristen took yesterday of Reid and his wonderland of developmental stimulation. She said he seems to really like the contraption that she built:

11:30pm: Well, we finally got the boot. Kristen got to the NICU, helped Reid get situated in his stroller and several of the NICU staff helped her get all of his things moved to the new unit. She said it was very overwhelming as a large portion of the NICU gathered to say their goodbye's. She made an exit out the NICU doors and trekked down the hallway to the TICU where her and Reid's two primary nurses and respiratory therapist helped Reid get settled. The nurses gave report to the new nurse and tried to detail every small nugget of information that they had learned/discovered over the past 5 months. They were essentially saying their goodbyes and making sure that he would be taken care of like he was one of their own. A few tears were shed as they said goodbye - I know we are only a stone's throw away from our Egleston "family" and they will occasionally pop in to say hello, but we are on our own again. Time to develop new relationships with a new set of doctors and team of pulmonologists...

Reid's new room is one of nine in the unit and is very isolated - inclusive of a door, a window to the outside world, a couch that folds out into a bed and our own bathroom. The nurse put new sheets on the bed for Kristen if she wanted to stay - but that might have to wait until this weekend?? The ratio of nurses to patients is 3:1 and we feel that we have a larger burden on our shoulders for making sure that Reid is properly taken care of. While I know that nothing bad is going to happen under their watch, I think we are going to be counted on for taking up a lot of the responsibility that our nurses in the NICU graciously did every day. I guess this, in essence, is a big fat welcome to parenthood of a medically fragile child. Managing time between work, trips to the hospital and taking more care of Reid is going to be harder than it has been in the past. Ideally, we will have this same (and more) responsibility when he comes home, but having this shoved on us today with less than 24 hr notice has made our heads spin.

Kristen was able to speak to one of the new doctors this afternoon and it doesn't appear that there are going to be many changes right now. They want to assess Reid for the next 2 to 3 weeks so that they can get a baseline of where he stands. On Monday's, the doctors round to decide what kind of changes will be made for the week. Reid is probably one of the sicker kids (I say kids as the age range can vary from infant to 21 yrs) in the unit and didn't even officially qualify to be in the unit to begin with. There are rules around the respiratory support level to even get in the TICU and Reid falls outside of the threshold. I guess this shows you how bad the NICU was hurting for bed space for the kids that are much sicker than Reid. Not even $18,000 a day can get you a spot one of the best NICUs in the country...

It is hard to explain the feeling that we both have right now; the only way I can describe it is feeling lost, no longer welcome and without help. I had this same exact feeling the day Reid was transported to Egleston back in December and I am sure that these feelings will pass with time, but for the moment, life sucks. Maybe it isn't as bad as I am making it out to be, but being in DC right now makes me feel powerless and not in control of the situation. I HATE that Kristen is having to do this on her own.

11:30am: A few updates:

• They moved Reid back up to 2.5 liter flow. They noticed while bathing him this morning (reason as to early morning bath noted below) that they saw some pulling by his ribs (i.e., working harder to breath). Another step backwards...


• We are getting moved to the TICU today where we will have a whole different set of doctors and a team of pulmonologists. Our time ran out in the NICU and we are sad to say good bye - we had built a "family" in the past 5 months and will miss many of the doctors, nurses and respiratory therapists that we were so used to seeing on a daily basis. Guess it is time to start from scratch for the third time since Reid was born...


• Reid woke up in a pool this morning. His diaper weighed 390cc (about the equivalent of the contents of can of soda). In addition to that diaper, he had soaked through his shirt, boppy, sheets and his beloved stuffed bunny. The rule has always been to not wake a sleeping baby... so instead of running the risk of repeating this process again, they have changed the time he gets his diuretic to noon rather than 6am.


• Kristen is getting ready to go into the hospital and work on getting Reid moved into the TICU. Unfortunately, I am in DC this week and won't be able to help her out. We should have more details later today when the dust settles.


• We need to keep those prayers coming Reid's way. I think our hopes of having him home this summer are becoming very slim!

5:15am: We took a few videos when we got back into the NICU yesterday evening. After Reid's bath, he was in a pretty playful mood, so I had to share:

5:30pm: Today has been a busy day in the NICU and it has been closed periodically due to multiple surgeries. We envisioned an early visit this afternoon due to me leaving for DC tomorrow, but it didn't open back up until 4pm. We were able to get in for a little over an hour before we were kicked out for yet another procedure. Guess it wasn't meant to be the day for us to visit. We are in the waiting room now and will head back in for hopefully 45 minutes before they close for shift change.

There has been a couple of changes today for Reid - they increased his feeds to 125cc and also weaned him to 2 liter. His CO2 was 58, which is good, but his base excess was a little high, which shows that his body is trying to compensate for a higher CO2. His potassium levels were elevated over the past few days so they have decreased his potassium chloride dose and changed his diuretic. They are hoping to wean his methadone again on Thursday.

Reid is giving us mixed feelings today as he doesn't appear to be his normal self, but he has also had 5 separate heel sticks as the machine that reads the blood for his gas tests wasn't working. The nurse said he had been up the majority of the day and had been smiling... so maybe we just caught Reid at a quiet time.

The doctor stopped by this afternoon and told us that the NICU is at capacity and for us to not be too alarmed if he is moved to either the TICU (technology dependent) or PICU (pediatric). We are not happy about this - but not sure there is anything that we can do. We are nervous about the ratio of babies to nurses and not sure if Reid is going to have as much attention as he does now. This isn't set in stone yet, but it doesn't look promising.

10:45pm: Sorry for the lack of updates, but this weekend somehow vanished into thin air - once again. Reid, for the most part, had a pretty good weekend. Saturday morning, we called in around 10:30 and they had mentioned that Reid had been crying non-stop since 7:30. Kristen and I rushed to get into the hospital to see what the deal was -- and was greeted by a waking up baby that seemed to be happy to see us. As the afternoon went on, we did see some crankiness, but nothing really out of the norm. At one point, we decided we were going to put him in his swing, only to find out that it was soaking wet. Upon further investigation, it was wet from milk. And while I know there is a saying that you shouldn't cry over spilt milk, Reid had every right to be upset. When he was in his swing during his 6am feeding, apparently one of the ports on his g-tube had opened up and when the milk was coming down the line, none of it probably made it into his stomach. And if this port was open, we assume that his medications that were in his stomach that may have not been digested, also probably worked their way out. We believe this was all unbeknownst to the nurse, so unfortunately, Reid was starving until he has his 9am feeding. Ugh.

Last week, his weight didn't increase and he may have even lost an ounce, so they increased his feedings to 120cc every 3 hrs. His methadone was weaned twice last week and we are now down about 20% from where we were two weeks ago. He is on such a small amount (.18 cc twice a day) and glad to see that we are getting closer and closer to him being done with that medicine.

Tomorrow morning, Kristen and I have an appointment with a prospect of a pediatrician. We are both hoping this one works out as it is maybe a mile from our house and the doctor has come highly recommended. We just need to make sure that she is comfortable and has the experience with treating kids like Reid. We also know how susceptible Reid will be to infection, so we are also interested to see if they would be willing to see Reid as their first appointment and also allow us to be seated in a separate waiting room from the rest of the patients. It may sound extreme, but we cannot chance Reid getting sick - and we will take every precaution necessary...

Anyway, bedtime for me. Sunday has come and gone and unfortunately, time for another work week to begin. I will be heading to DC again on Tuesday, so it will be a busy week for me. Hope everyone had a good weekend!

10:45pm: Physical therapy came by today to further work with Reid. After the nurse had discussed with the therapist that he seemed to mimic our own facial expressions, she decided to give it a try. Reid had been a little upset and when he had calmed down, she made a big "O" out of her mouth to see what kind of reaction she could get. Reid, still trying to collect himself, acknowledged her face, looked away and had a look of deep thought on his face. After thinking about this and analyzing it, within seconds, he looked back and made the "O" look himself. While it was only momentarily, it was deliberate.

Anyway, not much to report tonight. His O2 is still in the 50s and seems to still be handling the lessened flow. Here are a few pictures from this afternoon:

10:30pm: Reid is still hanging in there on 2.5 liter flow. In fact, when we called in at 9:30 tonight, he was on 50% oxygen. He has had a good evening and has done well with his bath and nightly routine. Here are a few pictures of him from yesterday that I had neglected to put up - him in his bumbo seat (and playing with his tongue):





6:15pm: Much sooner than we expected, they decided to wean Reid's flow back down to 2.5 liters. His oxygen requirements have remained steady over the past few days - actually, they have gotten a little better. Today when we visited him, his O2 was in the lower 50s. The doctor also mentioned that she was expecting to further wean his methadone tomorrow. Occupational therapy came yesterday and physical therapy today. He seems to have done well with both visits.

10:30am: Not much to report today so I will post a few pictures and a video that we took last night. His O2 this morning was at 53% - the lowest it has been in quite some time.

12:00pm: Doctors made their rounds and increased his feeds to 115cc (~4 oz) every 3 hrs and also increased his dosage of his diuretic (due to his increased weight). If things remain as is, they are going to most likely wean his methadone again on Wednesday.

11:15am: Reid had a really good CO2 gas this morning - 58. We had a lot of fun with him this weekend and he seems to feel really good. He has really started to be obsessed with his tongue and when in a good mood, it is usually sticking out. He really likes his mirrors too... Last night, the nurse peeked in on him after noticing on his monitor that his heart rate was not showing a pattern of sleep... what was he doing, you ask? Starring at himself in the mirror sticking his tongue out. Nothing like entertaining yourself when you should be asleep...

11:00pm: The past two days have been amazing visits for Kristen and I. Since Reid was put back on 3 liter, he seems to have changed back into the fun loving baby that we used to know. Both yesterday and today Reid has been awake for our entire visit (~4 hrs) and seems to be very stable. His oxygen has been hovering in the low 60s. In fact, I think that he seems to feel better than even before he was weaned to 2 liter.

The biggest developments over the past few days has been the discovery of his tongue, starring at himself in the mirror for extended periods of time and acknowledging what other people are doing (i.e., sticking his tongue out when other people stick their tongue out at him).

One of the nurses developed a schedule for Reid's day and we have implemented it over the past 2 days. It involves a set time to wake up, have physical therapy, bath time, tummy time, etc. We think he is at an age where a solid regiment will greatly benefit him (and his parents). I imagine that it will take a few more days for him to start getting used to it, but it feels good to have some bit of regularity. Even when we get nurses assigned to us that have never had Reid before, it will be good for them to know exactly what to do with him.

Bath time, which we are striving to accomplish earlier in the evening than we had in the past, has been going very well. He doesn't get upset much anymore and even if he does, I think we have figured out the ways to get him calmed down relatively quick. And it might not even be him that is learning how to tolerate baths, it may be us learning how to manage the baths to where they aren't so chaotic. Or maybe a little bit of both???

Anyway, here are a few pictures from the past few days:

4:15pm: Not much to report today other than Reid's CO2 was back to his "normal" - 63. His methadone dose was also weaned about 10% today.

10:30pm: I guess we have overstayed our welcome at the Egleston NICU - in 6 weeks, we are getting the boot and are going to be moved to the TICU (Technology Dependent Intensive Care Unit) down the hall. It is a smaller unit and primarily focuses on kids (birth to 21 yrs old) that have chronic pulmonary issues (I would imagine that most kids are on a trache). Reid is apparently too old/big for the NICU, so I guess it must come to an end. I am praying like heck that he comes home before those 6 weeks expire, but realistically don't think that he will be.

My mom said it well tonight, even though Reid had a little setback earlier this week, we need to think about the positives. While it is really hard for me to wrap my brain around a positive thought these days, Reid's breathing has been better since they put him back on the 3 liter flow. And with easier breathing, he can be more active and maybe this is a time for us to focus on his physical therapy and his developmental growth. PT is really focusing on elongating his trunk as a baby's length/height is one of the more critical areas for lung growth. So, the 'positive' for the moment is that we are to focus on making Reid bigger and stronger....

Kristen was finally able to visit Reid today. A happy mom makes for a happy dad. I am excited that she got to visit with him! She said there was lots of smiles and he did lots of 'talking'. Of course there was lots of talking -- he hadnt seen her in a few days.... and well, Kristen is female.

Reid's latest numbers: weight = 7.00kg; height = 62.7cm; head circumference = 42.4cm.


Here are a few pictures from the past few days... Not sure if I have posted any pictures of his new tape-job - he was having some skin break down in the previous place, so they had to move it out further towards his temples and a small piece on his nose to give his cheeks a break. I personally hate the tape on his nose (but there isn't much I can do about it). The second image below has Reid in action as he is rolling to his side (his latest trick). The third image below is Reid in his summer beach gear --- unfortunately, there there is no sand or sun involved!

11:00pm: [Kristen's Blog] I don't think there is anything worse than driving all the way to the NICU to drop off milk because he has ran out of supply and then NOT see your baby because you are sick. That is how my lovely day #4 of being sick started. I do feel better than yesterday so maybe this is a good sign? I hope so. I haven't been able to visit Reid since Friday and I am getting anxious to see him, but know the slight chance of him getting sick is not worth it. Chad is out of town this week, so it makes it difficult when neither one of us is able to visit him.

Reid apparently did not miss his mommy and daddy too much though as he slept the majority of the day. He is still back on 3 liters at about 80% O2 and his feeds have been increased from 105cc / 3 hrs to 110cc. He did spit up some last night--which is not good. The nurses are keeping a close eye on it and the only thing to help prevent this would be to extend his feedings over a longer period of time. The good news of the day is that Reid passed his hearing test! The audiologist actually did the test this morning while Reid slept and said that everything looks good thus far. This is one more item we can cross off our list.

Everyone seems to agree that Reid's work of breathing seems less now that he is back on 3 liters so I am sure we will be hanging here for awhile.

I am anxious to get to the hospital and see our baby! I am hoping that by Thursday I will be back to feeling like my old self.

Please pray for Reid's lungs to grow so that we can get back down to two liters. His next door neighbor was moved to the B side (step down unit) several days ago and will be going home soon. It's hard not to be jealous.

12:15pm: What we had feared happened. They went back up to 3 liter flow and are going to take another CO2 test this afternoon to see if there is a difference. They are curious to see if they just weaned too fast. Guess our chances at being home in 4 to 6 weeks are going out the window...

11:00am: Reid's CO2 levels were a little high this morning - 73. He had his cortisol labs taken just before, so he may have been a little upset (which can impact the number for CO2). Not sure if they are going to do anything about this, but it makes us a little nervous.

10:00pm: It's been a few days since I have last blogged but not much has happened that is noteworthy. Reid is still on 2 liter flow and handling it quite well. While the doctors had originally planned on putting him on 100% oxygen when he got to 2 liter, he has ranged anywhere from 60% to 90% with an average around 75 to 80.

The past two days have been enjoyable visits for me as Reid has been in a fairly good mood. Yesterday, he was awake for a solid 3 hours and I don't think a smile left his face the entire time. Unfortunately, kristen has a sinus infection that has kept her from visiting. She was prescribed some antibiotics so hopefully she will be back to normal soon. I leave for DC on Tuesday, so please let it be before then.

The meeting we had on Thursday with the doctors (neonatologist, pulmonologist, physical therapist, respiratory therapist and nurse) went as expected. There wasn't anything said that was earth shattering, but they did want to make sure that we were all on the same page. The pulmonologist still thinks that Reid would benefit from being trached, but she also said in the same breath that she couldn't come up with a convincing reason to do it. They are pushing Reid hard and seeing where he lands. They all remain optimistic, but know that Reid has to get to 1 liter flow before he comes home. Optimistically, they are striving for 4 to 6 weeks.

A bit of good news on Friday was that endocronology approved the administration of his first set of immunizations. He received three shots that afternoon and only had minor side effects from them (a very slight temperature and some tenderness around the injection site). In another 4 weeks, he will receive his second round.

His weight on Friday was 7.1 kg or 15.65 lbs.