5:15pm: Reid was bumped from surgery. An emergency surgery was needed on another baby and since he was an "add-on" to the schedule today, he was the first to go. He is, however, on the schedule at 8:00am tomorrow morning. Hopefully we will have better luck.

We did get a little bad news today. In addition to the E. coli and klebsiella that grew in the mucus culture, MRSA seems to reared its head. It took three days to culture and with the fact that Reid has improved so much over the past few days, they are hoping that they caught it early. What does this mean? He is now on an antibiotic for 2 weeks and is being moved into isolation where he will remain until he comes home. From what we understand, once you get it, you are always a carrier and the hospitals don't take risks and put you in isolation. Long story short, we picked the short straw again...

9:15am: Kristen just got off the phone with the surgeon so that we could provide consent to do the surgery. Sounds like the surgeons do this exact procedure quite often. The three risks of surgery are: 1) blood loss; 2) infection; 3) nerve damage. The typical amount of blood loss is about 1cc, the doctors administer antibiotics before and after surgery, and they do their best to preserve all nerves. They have Reid penciled in for a 3:30pm surgery today, but is subject to change.

6:45am: Reid will have surgery today and is listed as an "add-on" in the OR. This means that there is no definitive time as to when he will be admitted... so we will be sitting around and waiting to hear something. They did say, however, that it will most likely be later this afternoon. No other news to report... he had a good night again and seems to be very stable. They didn't touch any of his vent settings or change any of his medication.

3:30pm: Here is a PDF that further explains the process of the PDA ligation: click here. And for some further reading, I found this article helpful. And for those of you that don't mind watching surgeries, here is a YouTube video actually shows the surgery (I had to stop watching as I am not sure I want to know exactly how it is going to be done on Reid).

2:00pm: Cardiology and Dr. Moore have confirmed that Reid's PDA needs to be closed for his lungs to properly heal. With that being said, they are going to ligate the PDA within the next 24 hours. Unfortunately, they will not be able to do the hernia repair at the same time as there are sterility issues. PDA ligation is considered a "clean" surgery and the hernia repair is considered "dirty" as it deals with the bowel. In addition, the PDA ligation will need to be completed in the OR (instead of bedside) due to anesthetic reasons.

Also, the antibiotics that Reid has been on for the past few days are used for pneumonia. They are not 100% convinced that it was pneumonia, but did say that it was pneumonia-like and are treating it accordingly. No wonder he was so sick. The combination of the steroids, the antibiotics and the fixing of the collapsed lung have all contributed to the success we have seen over the last three days.

Reid will answer the question as to when his hernia repair will be completed. I assume he will need at least a few days of recuperation from the PDA before they even consider the hernia repair as an option.

1:30pm: The good news is that Reid's O2 is now at 38%. The bad news is that the pulmonary hypertension is back. Not sure yet as to what they are going to do about this. My thoughts are that it may be due to the fact that they have almost completely weaned Reid off of the NO and he hasn't been increased on the Sildenafil. Not sure if there is a direct correlation there... Still no word on the surgery.

9:00am: Our little rock star had another great night. His O2 is at 40% and they were able to reduce his respiratory rate down to 19. His blood pressure medicine, dopamine, was started again yesterday for a short period of time due to his pressure being a little low. They had previously reduced his hydrocortisone which they think may have been the result of the reduction. When they increased the hydrocortisone then stopped the dopamine. His pressures seem to be OK again. We are still waiting to hear if he is going to have surgery today. His respiratory conditions clearly show that he is ready, but I imagine they will be doing an xray and ECHO prior to. Will keep the blog updated as soon as we hear anything...

5:30pm: Reid continues to have an awesome day. Most everything is the same with the exception that they have lowered his O2 down to 61% and his NO to 2.2 ppm. Even with all of the changes, he is still maintaining a 94 saturation. He looks really good as he has lost some of those extra fluids that were bloating his hands, feet and face yesterday. The question now... is surgery going to happen tomorrow??? A follow-up ECHO will be done in the morning and the doctors will assess. On a different note, Shannon, my sister, came to visit today and brought us cookies, pumpkin bread and dinner for tonight!! Thank you Shannon.

10:00am:  Reid had a really good night last night.  As of 6am this morning, they had weaned him down to 30 breaths per minute (which is the lowest he can be at while paralyzed), have his Nitric Oxide at 5 ppm and his O2 at 80%.  Last night when we called at midnight, he was at 96% O2, so he made huge progress is a short 6 hours.  He is also on Lasix to help him with his urine output --- he was getting rather puffy from laying still while on the Nurcuron.  The nurses said he looked much more normal last night after he had rid himself of some of the extra fluids.

Today promises to be a full day of visiting Reid, cleaning house, finishing Christmas shopping, working and picking up Erica (Kristen's sister) from the airport tonight.  Somehow, I need to find time catch up on some of the things that are starting to be neglected around the house (i.e. laundry and bills).  There is rarely a moment when we can sit down and relax these days.  Some of you will probably say that this all comes along with having kids... but I will gladly welcome the day that Reid comes home and causes me not to have time.  These long commutes downtown everyday usually kill everything that we try to accomplish for the day.  The other night, it took us nearly an hour and a half to come home from visiting Reid (and its only about 12 miles away).  Anyway, I will finish my gripe section and actually do something about it. Time to start the laundry. :)  By the way, here are a few pictures of him from yesterday:

8:30pm:  This has, by far, been one of Reid's better days this past week and they have been working on weaning Reid off of the Nitric Oxide.  Yesterday, he was on 20 ppm (which is the max), and is currently at 4.8 ppm.  They probably won't wean him all the way tonight and will probably wait until tomorrow when the doctors are around (assuming he is ready for it).  They were also able to wean his breaths per minute down to 30 (down from the mid-40s yesterday).  The collapsed portion of his lung seems to be back to normal again (I guess as normal as normal can get for having chronic lung disease)

From a medicine standpoint, they got Reid off of the Dopamine (blood pressure medicine) and have put him on hydrocortisone (steroid) to further help his lung development.  They have also added an antibiotic and are culturing his blood and some mucus that was removed during one of his CPT treatments.  I believe his blood was sent off 2 or 3 days ago and hasn't returned anything yet, but the mucus that was sent out yesterday has returned a gram negative rod bacteria.  Seems like he has had these all too many times, so they will probably continue with a 7-10 day regiment of antibiotic.  Premature babies just don't have the immune system that they need to ward off infection.  This very well could have been what caused Reid to take a turn for the worse the other day.

And the best news of the day ---- Reid had an ECHO this morning that showed that his pulmonary hypertension has gone away.  Now, this doesn't mean that it won't come back, but this is still great news.  With that gone, they have been able to reduce his oxygen saturation limits to be between 88 and 92.  However, with all of the weaning today, he has still been hovering in the 93-95 range at 100% oxygen.  When the nitric has been removed, they will start the weaning on the O2 levels.

We met with a new doctor today (Dr. Cornish) who is covering for Dr. Moore over the weekend.  It was a very informative chat and he probably sat down for 20-30 minutes with us.  He walked us over his xrays, drew diagrams (explaining pulmonary hypertension and chronic lung disease) and talked about some of the things that we, as parents, will endure along the way.  Dr. Cornish has a son with Down Syndrome that was born prematurely and had two holes in his heart.  He was quick to point out that he knew what it was like to be a parent going through this rollercoaster of a ride so he was able to come down to our level with some of the emotional side effects that come along with the territory.  I could go on and on with what we learned from him today, but I will sign off tonight with a lesson that he said we need to remember (which is probably heavily paraphrased):  "Don't take the highs to high and don't take the lows too low.  Doctors give you good news that can change at any second and can give you grim news that may not turn out to be all too bad.  You are in this for the long haul and need to focus on Reid getting better and keep stable and positive outlook."

10:00am:  Reid had marginal progress last night.  They were able to wean him down to 95% O2 and when they got his breaths per minute (BPM) down to 37, he starting sat'ing in the lower 90s.  Their goal is to have his saturations stay around the 95 mark, so they ended up pushing his O2 back up to 100%.  I have to keep reminding myself that the lowering of the BPM is a really good thing though.  When it is all said and done, the BPM is one of the key points that decides when he is extubated.  After surgery, they will extubate when they can remove the paralytic and get the vent to only giving about 15 assisted BPM (in addition to whatever Reid is doing on his own).  Progress is progress... regardless of how big or small.  The key thing is that we are moving in the right direction.

4:00pm: We drove all the way downtown today, visited with Reid for about 20 minutes and was then kicked out as they were doing the same surgical procedure that they did on Reid last night to another baby.  Not fun to come all this way and then sit and wait in the wating room...

Reid hasn't had much progress today.  His lung collapsed again and they are working hard (frequent CPT) to get it to open back up again. His oxygen levels remain at 100%, but is sat'ing in the 93-97 range.  They have also noticed that he is becoming immune to the nurcuron, so they have up'd the dosage (twice the amount).  They have also put te morphine and nurcuron on a drip so that there isn' a chance of Reid starting to wake up and become stressed out.  They are focused on healing those lungs, and are taking all measures to ensure that he does just that.

8:30am:  Kristen called the NICU at 6:30 this morning as we hadn't heard if Reid was going to go into surgery.  At that time, they were on the phone with the OR and still hadn't had a doctor or surgeon assess Reid.  They did tell us that he had a fair night and had to go slightly up on his breath frequency on the vent.  Other than that, I think everything remained the same --- 100% O2 requirement.  They called back a little after 7 when Dr. Moore made the decision that they wanted to wait until at least Monday on the hernia repair.

I am doubtful that they will return feedings and will probably keep him in the sedated/paralyzed state that he has been in for the past few days until they do surgery.  The milk feedings will require him to work (digestion) and would also require him to be off the paralytic (which would also make him work).  The hyperal and the lipids give him all of the essential nutrients and he can live just fine on them.  I think there is a mentality that you have to have food in your tummy to grow, and I am trying to get over this thought.  The nurse the other day said that you could essentially live your entire life on these fluids if needed...

Anyway... it was a long day yesterday, but Kristen and I are glad it is over with.  We are also both glad that surgery was postponed again.  When suggesting this to the Nurse Manager this morning when I talked to her, she sounded a little surprised (I think she assumed we were ready to get this over with), but I told her that I didn't him going in there on 100% oxygen.  She said that he would probably be fine as he handled his Central Line very well, but that they didn't see the need for further risk.

Anyway, my eyes are heavy and I am still exhausted but I can't sleep.  Guess I will go downstairs and eat some breakfast... I smell my parents cooking some bacon and eggs. :) 

2:30am:  My apologies for not posting many entries today, but today ended up being a fairly bad day for Reid (and mom and dad for that matter).  When we were finally able to get into the NICU around 4pm yesterday, we came to find out that they spent 2 hours trying to get the PICC line put in place.  Prior to that, they had failed at placing 6 peripheral IVs.  The poor little guy looked like he had chicken pox with so many red dots all over his body where they attempted to get access points in place (Kristen counted over 20 marks).  The reason this all started was that the IV that he had placed in his scalp went bad and this is the spot where they were administering his blood pressure medication (a very critical medicine).  They were desperate to get something in place and tried so many times and they were finally only able to get another IV in another location on his scalp. This wore Reid out and he was then placed back on 100% oxygen because he either in a little bit of pain or his body was too stressed out.

Knowing the issues that they had today, they made the decision to surgically insert a central venous catheter (a.k.a Central Line).  Surgery was at his bedside in the NICU and started at 9pm tonight and lasted about an hour.  To do this, they make two incision points, one on his chest just above his nipple and another one on his neck, just above his collar bone.  The process involves threading the line through his chest, up into the neck, where they insert it into his jugular vein and then all the way down to an area just on the outskirts of the heart.  Passing the catheter under the skin (from the chest to the neck) helps prevent infection and also provides stability and is a process is called "tunneling".  If an infection is to occur, it is most likely to attack at the chest opening and will take some time to reach the insertion point of the catheter in the jugular vein.  This time will provide the doctors the ability to administer antibiotics to thwart off the infection before reaching the critical areas.  In terms of stability, if the catheter is accidently tugged on or moved outside of his body, the extra tissue (the area between the insertion point in the chest and the access point in the neck) allows for a sturdy anchor without the threat of it tugging on his jugular.  This should now allow the doctors and nurses to administer drugs very rapidly, as they are being administered almost directly into his heart.  And it also has the added bonus that this should prevent him from needing to be stuck with new IVs several times a day and can last several months.

Kristen was a little nervous about seeing Reid in his post-op state, so my father and I drove back down to the NICU and got there just as they were finishing up.  He looked much better than I had envisioned, but as you will see in the pictures, he had a rough day.  Both sides of his head have been shaved in various attempts over the past two days to get some IVs going and his forehead was splotchy from the administration of the blood pressure medicine (which highly agitates the soft skin tissue).  The pictures will show the two access points the surgeon used to place the line.  You will see some areas of deep pink or redness, but this is just the way the picture turned out as those areas are where there is glue on his chest... Kristen, my mom and dad all thought it was part of the wound, but it's not.  Actual incisions are maybe a quarter of an inch long. The new line now has three different things going in:  1) his hyperal (nutrition); 2) lipids (fats); 3) his blood pressure medicine. 

His hernia surgery is supposedly to begin at 7:30am tomorrow morning.  I am anxious to see if this is really going to happen, but they felt fairly certain that it would go on as planned.  With that being said, I have a few hours to catch some sleep before tomorrow begins so I will wrap up.  For the faint of heart, look at the images with caution.

Pre-Operation Pictures:

Post-Operation Pictures:

3:15pm:  Kristen and I just got to the hospital and when we called in to the NICU to let us in, they told us that we had to wait.  Apparently, they are in the process of putting in a PICC line that they had told us about this morning.  The IV that was in his scalp had fallen out or was no longer working.  Since the other veins in his hands and feet are used up, and with the thought that he might be here for a little while, they decided to go ahead and put one in.  He has had one in the past and they do last much longer (~3 weeks), so it will be nice if they don't have to poke him much more.

9:00am:  Reid's surgery was scratched again as they are still waiting to make some further progress.  He had a great night last night though and is moving in the right direction.  They were able to reduce his oxygen requirements down to 87% from 100% and even further reduced his breaths per minute to 44 (which was at 60 yesterday).  He CO2 levels were at 48 last night which is a completely normal level and don't think that we have ever seen them that way before.  He just needs to keep up this progress...

We haven't made it into the NICU today, and probably won't be there until much later as they are closing it down for three surgeries.  They commonly operate on babies inside the NICU and restrict people from coming in at those times. This is such a foreign concept to us that they wouldn't take them to the operating room, but they feel that being able to do it there rather than transport babies to other floors in the hospital is less stress on the babies.  They don't do all surgeries there, but there are quite a few procedures that they can.  Reid's hernia surgery will be in the OR due to the fact that it is going to be laparoscopicly done --- they just cant move all of the equipment into the NICU.  Although, when he has his PDA (heart) fixed, that can be done at bedside.

Anyway... not much else is new... but that is a great thing.  He had an awesome night last night and we are praying for an even better day.

10:00pm: No real updates right now.  When Kristen talked to the nurses at 8 tonight, there hadn't been any change in his breathing.  We are both expecting the surgery to be cancelled as we feel they are going to want some improvements in his breathing before moving forward.  We will call at 6am to see if there are any changes...

4:30pm: Looks like surgery may be a go for tomorrow. Cardiology cleared him so all teams are getting ready for tomorrow. In the morning, he will undergo one more ECHO and one more xray to ensure that he is stable. We still don't know the time slot that he will be put in, so I will update when we know. They told us to prepare for about 3 hours (half for the actual surgery, and the other half for prep, transport to OR and transport back to the NICU).

His oxygenation seems to be marginally improving (they have slightly lowered the breathing frequency and his saturations seem to be holding up). They are assuming that some of the collapsed portion of his lung may be functioning again -- I think the breathing treatments, the suctioning and the CPT seem to be helping.


1:00pm: Not a fun sight to walk into the NICU and see your son laying in bed with a blood transfusion going in at a vein on the right side of his head. His arms are already used and I think that his feet are all used up. The head, believe it or not is one of the easiest places for an IV... so if it easy for the nurse to give it, it means that it is less painful for Reid. Just not pleasant to look at.

When we got into the hospital today, his sats were starting to decline, but he had just had another ECHO and he was starting to wake up. Any kind of stimulation causes stress and in turn hurts his saturations. Also, any sort of muscle movement, other than just laying down and relaxing, causes the body to require more oxygen. While we thought the nurcuron (paralytic) was to keep Reid unaware of his pain, we found out today that it is predominantly used to restrict his movements, which in turn deduces the levels of oxygen that his body requires. The nurse made the analogy that, in a car, its fuel tank is only so large. How you drive the car, fast or slow, defines how much fuel it is going to consume. So, if we are driving slower, we can use the fuel more efficiently. Long story short, they administered another dose of nurcuron to keep his body more oxygen efficient and his oxygen saturations went back up into the low to mid 90s.

The ECHO results should be available in about an hour and we are anxious to see the results. His lung is still partially collapsed and we are praying that this can correct itself soon so that we can come down on his oxygen requirements. Another xray is scheduled for the morning. I think we have seen enough between yesterday and today to know that surgery is probably not likely for tomorrow as well. Maybe Friday???

9:00am: Reid didn't improve much over night and his xray showed that his lung was still collapsed. His CO2 levels are hovering in the 60s and is still on 100% oxygen. His hematocrit level (red blood cell levels) was at 34, and when on the vent, that requires a blood transfusion (normally they would have let it get down to 30 before transfusing). The red blood cells are the ones that are responsible for delivering oxygen to the body. The nurse this morning was able to suction a fair amount of fluids/mucus out of his throat, so I am not sure if some of the medicines that they have put him on to help lubricate his lungs are causing this.

On a different note, Kristen was able to get a good 9 or 10 hours of sleep last night so she seems to be well rested this morning. Me, on the other hand, only got about 6, which is about normal, but somehow struggling to wake up. Anyway, we will eat some breakfast and head out to the NICU late morning. Our friend Alison is coming to visit this afternoon. I am sure it is going to be another long day...

11:15pm: Just got off the phone with the nurse and they still have the ventilator at the same settings as they did earlier but it appears that his repositioning and his breathing treatments are working.... his oxygen saturations are now hovering around 99-100%. They are going to reposition him fairly soon so that his other long doesn't collapse (which can commonly happen if one collapses). They feel that the collapsed portion (upper right) has started to inflate again as seen by the high oxygen saturations. Another xray is due at 4am. With that said, this will be my last post for the evening. And now that the house is quiet and everyone in bed.... time for me to start work. :(

8:15pm: After a chest xray tonight, they have located the source of the poor oxygenation: a collapsed lung. This sounds bad, and it kinda sorta is, but he has had them several times in the past. The corrective action is for them to give him some breathing treatments and change his position (usually by propping up one side of his body so that he lays at an angle. Hopefully if we can get this lung working again, he wont need so much support. His 6pm gas test showed a CO2 in the low 80s and at 8 tonight, it was back down into the mid-70s.

5:00pm: Looks like they are going to hold off on surgery until at least Thursday as they want to give Reid a little more time to recuperate. He will most likely stay paralyzed and doped up until surgery. Because of this, he will not resume his feedings, instead, he will start his hyperal (IV fluid that will replace the breast milk for all of his nutritional needs) tonight. He is still on the NO and will probably come off of that tonight, but he is still requiring large amounts of O2 to keep his saturations high (90-100% range). He was administered a blood pressure medicine (dopamine) as his was falling a little. Unfortunately, this required a second IV... so, once again, he is well connected with tubes. Grandma and Grandpa Elley came for a visit today, as did his nurse Rachael from his previous NICU. It was nice to have company as it helped pass the day. We are on our way out the door now, so I wanted to post a quick update. We are both exhausted.

Noon: The cardiologists didn't think that Reid was stable enough for the catheter and took advantage of his PDA so that they could monitor the flow and pressure of the blood in the heart. They took another baseline ECHO and then hooked him up to Nitric Oxide (NO) for 25 minutes. They used this to see if opening up his veins would lessen the stress on his heart. Apparently there was some success, so they are going to prescribe Sildenafil. This is something that is going to help Reid in both the short and long run. I keep relating all of the scans/tests with an immediate need... but I am quickly learning that some of the pokes and prods are just precautionary and looking at long term solutions. It is nice to have a team of specialists hovering around Reid. New nickname: Woody.

9:15am: Surgery has been postponed to at least tomorrow. The ECHO showed signs of the PPHN that was originally shown while at Cobb Hospital. They aren't overly alarmed, but they think that it is worthy of postponing the surgery until he has had a day to calm down after the episode that he had last night. Talking to the doctor, apparently the episode he had, which he called an acute episode, was most likely due to the fact that he had spit up at the same time as receiving higher levels of oxygen and it all went downhill from there. Nonetheless, they got him stabilized.

We got the results of the head/brain scan this morning and everything looked normal. He did have a cyst, but apparently it was the type that is very normal in newborns. There was no evidence of brain bleeding (which is unfortunately a common thing that is seen in premature babies that are born as early as Reid). So, this was good news to us and this adds to things they can check off.

For today, there are going to be some follow ups with the cardiologists to see if a pulmonary artery catheterization is needed to further evaluate the stress that is causing his PPHN. With this catheter, they can get direct readings from the heart and also administer medicines to see their direct impact. This will be a good read to help determine if he is a candidate for Sildenafil (Viagra) to help treat the hypertension. This may sound odd... but if it takes a 'woody' to help him breath, I am all for it. :)

That is about it for now. Kristen and I will hunker down for the day and stay by his side and await any news from the cardiology team. Reid is paralyzed and calm - not a fun thing to see, but at least we know he is comfortable. I would expect that if the cardiology team doesn't take any action today, they will wean Reid off the paralytic and hopefully resume feedings.

8:30am: Surgery is being delayed for the time being. After the rough night they wanted to do another ECHO to ensure that he is still stable enough for surgery. The cardiologist just reviewed the scan and is now talking to the staff of doctors. We are trying to be patient but we are full of nerves this morning. Seeing Reid paralyzed again and on the vent brings back too many unwelcomed memories of the past. They just did another CO2 gas and it came back at 51 (the one at 4am was 65). The vent is obviously doing it's job of removing the excess gas.

6:00am: Reid didn't have a good night last night. After a third dose of arginine that didn't work and a CO2 of 104, they decided to intubate him. They are not sure why he was requiring so much oxygen or retaining so much CO2, but they knew that the needed to be intubated for surgery this morning anyway, so they went ahead and did it. When they did it, he apparently "clamped down" on the tube and stopped breathing (think it is a fairly normal reaction in babies when they have something foreign in their breathing path). He is old enough now to know what is going on, so they ended up using an ambu bag to mechanically breath for him and gave him norcuron to paralyze him to prevent him from clamping down again. Once that took, he relaxed and now the vent is breathing for him. He is on a breathing rate of 45 bpm and at 80% oxygen. Kristen and I are getting ready and will be in at 8am when the NICU opens back up for visitors. I will blog again after he goes into surgery.

Updates:

8:00pm: We made it home and are now parked on the couch for some mind-numbing TV watching. The only other update I have is that Reid had a brain/head ultrasound this evening but do not know the results of it. I assume we will hear more tomorrow.

4:00pm: It has been a long day and for the most part, everything has been done that needed to be done today. The eye test that was supposed to happen at noon ended up being around 2. Good news though, no laser surgery needed today. Dr. Hubbard's prognosis was Stage 2, Zone 2, which is better than what was determined at Cobb Hospital (Stage 3, Zone 2). A follow up will occur in 7 to 10 days... so for now, we are out of the woods for at least another week.

And just when we get something to go our way and have a little good news, the cardiologist presents us with the news that his PDA has opened back up and may need repair. This is something that has habitually plagued us since he was born and tends to open and close, but being at the age that he is, it appears that mechanical intervention is needed. Between the two ECHO's that he has had (last week and today), there is a bit of disagreement between the two as to how much pulmonary hypertension he has. This may be the deciding factor as to if he will have PDA ligation this week. Another ECHO is planned for Wednesday and should tell us whether or not he can go longer before he needs repair or if it is something that they can do now while he is here. This surgery involves an inch long slit on his left side underneath his arm near his armpit. The surgeon will then, between his ribs, lift up his lung to get a clear shot at the heart. The ductus will be located and will be temporarily clamped down until they are able to watch his blood pressure and vitals to ensure they have it correct. Once sure, they then insert a medical clamp to secure it (which he will have for the rest of his life). Once complete, they go through and sew up the incision. All said and done, it is a 20 to 30 minute procedure --- one that is fairly common amongst premature babies.

Hernia surgery is tomorrow. We just got done talking with the surgical staff and signed the consent forms. Surgery is planned around 8:30-9am tomorrow and he should be back in the NICU by noon. This surgery is about 30-45 minutes per side and since both are there, it will be a fairly long procedure. Talking to the surgeon, he said the lining (hernial sac) that they have to separate from the boy parts and the intestine itself is the thickness of saran wrap and has the consistency of wet tissue paper. Doesn't seem to be a difficult surgery, just very tedious.

Reid will go on a ventilator, sedated and medicated in the morning and will be "out of it" for the majority of the day. After 24 hours, he should be coming back to normal but will most likely be on morphine to help with the pain of both the surgery and the tube down his throat. If Wednesday's ECHO proves that he can have surgery on his PDA, he will remain ventilated for a possible Thursday or Friday surgery. Once that is all complete, they will work on weaning him from the vent.

Well, Kristen and I need a breath of fresh air, so we are going to step outside. I don't imagine there will be any more news for today, but will keep you informed tomorrow. As I always say, keep the prayers coming this way!!!

8:00am: Reid did well last night. The medicine that they had administered yesterday seems to be working and his CO2 was 63 (a number that he hasn't seen in quite some time). Kristen and I are getting ready to head in and go visit. His last feeding was at 6, so we are prepared to see a cranky baby. Jennifer and Shannon (my sisters) are going to be there this morning as well.

Today has been a very long day that has been full of down's with not so many up's. It all started off with a 9am visit to the NICU where everyone knew it was Reid's last day. We had visits from all of the nurses wishing us well and there were plenty of tears shed. The Cobb Hospital NICU has been our home for the past 3 months and we have developed a secondary family there so it was tough to leave.

The entire team was trying their best to prepare us for what was going to take place: Kristen and I both like to know what we are getting into before it happens so that there aren't too many surprises. The first thing they tried preparing us for was the chance that Reid may have to be placed on a ventilator to be transported. The reason I bring this up is that there is a funny story behind it... Shelly, a respiratory therapist that has bonded well with Kristen and Reid over the past few months went up to Dr. Metcalf to tell him that if Reid had to be intubated that she was the one that had to do it because "he is my baby". Dr. Metcalf looked at her, paused, and said, "No, Reid is OUR baby." Long story short, he didn't have to be intubated for transport, but it just goes to show the care and support that we have there. It is our hospital family and they look out for us just as the rest of our "real" family does.

The transport team showed up around 11am and took about 30 minutes to prep him and get him onto a mobile support cart where he had all of the same bells and whistles that he has at the hospital. He was taken away by a team of 4 people: two respiratory therapists, a nurse practitioner and EMT driver to the truck and they headed onto the highway for a 30-40 minute drive to downtown Atlanta. We followed suit and headed that way and when we arrived they had just finished putting Reid into his new home.

We were able to visit with him only momentarily as the nurses and doctors had to assess him, hook him back up to the CPAP, and get a new arterial line put in. Afterwards, we were able to visit with Reid's nurse and the doctor that was on call for the weekend (not Reid's doctor that we will be dealing with while he is a Egleston). To be quite honest, we didn't care for the doctor right away because she would barely look at us in our eyes. She stared at my chest the entire time she talked to me. Nonetheless, she proceeded to paint a grimmer picture than what we had been used to and was quick to point out that not all babies with Reid's condition "make it". The frustrating thing, after the initial shell-shock wore off, was that I don't think she was well-versed on Reid's condition and was probably stating this from a pure numbers perspective. As background information, if you look at Reid's stats from a clinical standpoint, Reid should be worse off than he is. However, his body (heart, kidneys, etc) has compensated for his high CO2 readings and he makes it work. So... longer story short, this was probably something that should have probably not been said within the first 2 minute of her talking to us --- especially since she was not going to be our doctor.

We had to leave again for about an hour after this conversation (more poking and prodding to be done) and when we came back (a little more composed this time), our nurse sat down with us and chatted with us. The first thing that came out of her mouth was an apology as to how the doctor handled the situation. And this was followed by 3 hours of a very nice visit with Reid with a very caring nurse that was there to comfort us. We left about 7pm and headed home to cook dinner.

Tomorrow promises to bring more up's and down's as we will learn what is to unfold over the next few days. At 6am tomorrow morning, Reid will have his last feeding as he starts his preparation for a possible surgery. In the morning (time unknown), he will have an ECHO and brain/head scan done. At noon, he will have a visit with the eye specialist to see if laser surgery is needed. Assuming it is needed (which it very well may not be), he will be put on a ventilator and sedated and will have the surgery at some point tomorrow afternoon/evening. Kristen and I are preparing for him to be sedated earlier on in the day as he is going to quickly lose his composure without food; he can barely go 3 hours without it. Nonetheless, I imagine before a possible eye surgery that we will have met with the cardiologist (to look at the Pulmonary Hypertension - PPHN) to determine if he is fit to even have surgery. The PPHN has an adverse effect on the right side of the heart and they want to make sure that Reid can not only handle surgery, but that there is nothing wrong with his heart itself. Assuming this works out, I would imagine that they will coordinate with the surgeon that will perform the hernia surgery. I am sure that I have missed out on a few things, but my point is still the same: Reid has one busy day tomorrow.

And before I sign off for the night, there is one bit of good news that is going to come out of this visit to Egleston: there are no restrictions on who can come visit Reid. Well, some restrictions: 1) must be over 18; 2) must be accompanied by either Kristen or myself; 3) only two people at bedside at a time. After 102 days, my sisters will finally be able to see Mr. Reid and are planning on a morning visit tomorrow. Woo hoo!!

Well, it is getting late and I have rambled on too long. I will pick this entry up again tomorrow afternoon when we know more. Keep your prayers coming.

Not much is new today other than we learned that Reid will be transferred between 10am and 1pm tomorrow. We are ready to get the show on the road and the hernias behind us!!! Anyway, I wanted to post a few pictures from yesterday and today. By the way, Reid has a less attractive wrap around his head to hold the CPAP equipment on (it works much better though). The hats and velcro straps were not working too well as Reid has learned how to rip them right off.

So it has been a few days since I last blogged so I thought I would get one in before the weekend started and the mad rush to get things done around the house begins. This weekend is Christmas shopping time for the Elley's, so I am sure the weekend will be gone before I know it.

Reid has had a rough couple of days and has been requiring much more oxygen (and much more attention) to keep his saturations up. The doctors are not quite sure of what is causing it, but after a couple of xrays and echo's, they have noticed that his lungs are not in good shape (maybe even worse???) and to top it off, he has pulmonary hypertension (PPHN). The dilemma we are facing is that to help with the PPHN, they have to increase his oxygen levels. The downside of this is that the high oxygen levels are the driving force into what is causing Reid's eye issues. Right now though, his eyes are the lesser of the two evils --- one has to give.

Nonetheless, we are still hoping that Reid is transported to Egleston on Sunday. With the PPHN, there may be some slight issues and cause the doctors to delay the surgery. However, Reid's oxygen requirements have been elevated for the past few days and with still a few more days until surgery, we are hoping that it will pay off and reduce his levels of PPHN. Monday should be an interesting day... First things first, the eye specialist will check Reid over to see how his eyes are progressing. Dr. Metcalf said that if he needs laser surgery, that this is something that they would do right away (possibly even before the hernia surgery). Also, since he will be at a specialist children's hospital, he will have a team of specialist do some further tests (heart, lungs, etc) to see if they see anything that hasn't already been discovered. We think that Dr. Metcalf is the best thing since sliced bread and wouldn't trade him for anything, but it will be nice to have a second set of eyes looking at Reid. If all goes well, we are hoping that Reid will have surgery on Tuesday for his hernia (and hopefully his circumcision as well). He will be intubated for these procedures, so the sooner they can then get him off of the vent, the sooner he can come home. I think in the best case scenario, we are looking at least 4 or 5 days. With the hospital being downtown at Emory, it is not going to be an easy 10-15 minute drive anymore. :(

Today, I went into the NICU about 2:30 and was able to bottle feed Reid for the first time. It is fun to watch him suck on the bottle and watch him coordinate his breathing and swallowing. He would take a few sips of his milk, swallow, take a series of quick breaths and then start the whole cycle over again. This may not sound like a big deal, but for babies on CPAP, this is an incredible task. Between what I described and having a high volume of pressured air/oxygen being forced up his nose, it is no simple task. I mean, sometimes Kristen can't even walk and chew gum at the same time (like last night)... let alone try something like this. :)

Anyway, we aren't expecting to know anything more until Sunday when we get a confirmation that the transport team will be coming to pick him up. Obviously, other children with more critical situations will take precedence over Reid, so we will be at the mercy of God as to when Reid gets his first trip out into the real world. Keep saying your prayers and I will update again on Sunday. Hope everyone has a good weekend!

Just wanted to post a quick update: I called Dr. Metcalf this morning to discuss Reid's plan and it looks like Reid will be transported to Egleston Children's Hospital At Emory University on Sunday and will undergo hernia surgery on Monday. He wanted to make sure that he was at Egleston when his next eye test was due so that if there are any changes that require laser surgery, he is already in the right place to have it done.

Reid had an echo done this morning, will probably have a xray done on Friday. He is slightly anemic (decrease in normal red blood cells) which will most likely require another blood transfusion before transport. The red blood cells help with oxygen transportation and will help reduce his oxygen requirements for surgery.

All this time, Kristen and I have been wanting to hurry up and get the surgery on the road, and now that it is a reality, there is a huge sense of nervousness that has come over me. I know that everything is going to work out, but I just feel so bad for Reid as he has undergone so much over the past 3 months. As a new parent, I have quickly become aware that his well-being and his safety are my responsibility. However, in this situation, there is absolutely nothing that I can do but sit back and pray. Not a welcoming feeling to have...

Anyway... this is the tenative plan and will update you with more details as soon as I have them.

Reid had his eye test today and the results were good: there was no new growth and the small hemorrhaging that was present last week was not there today. Another follow-up test will be performed next week. Although I can't complain too much with the good news today, is anyone else tired of the waiting game?!?

Dr. Metcalf has been out of town over the past few days attending a conference in DC and will be back in the NICU tomorrow. We are anxious to see what is going to come of the hernia sergery because it seems that the eyes are holding steady and there is no rush to have laser surgery. The hernias have not been that bad over the past week and are easily reducible, so I am guessing that surgery will be held off on that as well.

Reid is continuing to grow and weighed in at 6 lbs 8 oz last night.

Tomorrow (Dec 9th) is Kristen's original due date. As Dr. Metcalf reminds us, the past 14 weeks have been a sneak preview of Reid and tomorrow, he would have been ready to be born. It is hard to believe that 14 weeks have passed, but at the same time, it also feels like we have been living in the hospital FOREVER. We have come a long way, and we have a long way to go, but every day that passes is another day closer to him coming home.... and we are READY for him to be home!!!

My parents are coming into town on Wednesday to see my niece's (Evelyn) performance at school, so on Thursday, they will be able to visit Reid. It has been awhile since they have seen him, so we are anxious to have them visit. Reid will have changed quite a bit for them, so it will be exciting to show him off again. :)

Anyway, no other news to post. Will post later this week when we hopefully will get more of a direction as to when his hernia surgery will be.

No update: eye test was scheduled for tomorrow and not today.

Sorry it has been awhile since my last post. This past week seems to  be a blur to me between the short visit to DC and the short visit to Chicago. The conference in Chicago was fun, but I was definitely ready to come home.

Today is the first day that I have seen Reid since last Monday as I came down with a sniffle and a cough while I was gone. I think that I was probably fine, but taking the chance at getting him sick just wasn't worth it. I must say though, that going a week without seeing him quickly proved how fast he is growing. He is a chunky little baby!!! Last night, he weighed in at 6 lbs 4 oz.

Reid has a follow-up eye test tomorrow. This should give us a clearer picture as to where we stand on both surgeries. I think they are holding off on the hernia surgery until there is some definitive news about his eyes. Now that I am back home, I am hoping that they can do the surgery this week. Personally, I would rather do it now rather than wait until it gets closer to Christmas. Surgeries around Christmas don't sound like fun!

There really isn't much else that is new. He is doing a little bit of breast feeding and is up to 50 cc of milk every 3 hours, so all is well in that department.

Well, I will wrap this post up and will follow up again tomorrow after the eye test (which is usually around 4 or 5pm). Hope everyone had a  
good weekend.

A quick post as my night is running short. I have packing for my trip yet to do and some work I need to finish, but I did want to get the latest news out there while it was still hot off the press. Reid had his follow up eye test, and while there was some good eye growth, there was also some unwelcomed growth. When probing the doctor, he thought laser surgery was coming around the corner in a couple of weeks. Not the news we were looking for.

The good news for today: Reid weighed in at a whopping 5 lbs 15.9 oz. It my eyes, that is as close to a six pound baby as you are going to get. :)

He is still on the CPAP and will hopefully know more about him coming off of it tomorrow. I know Kristen has a question list a mile long for the doctors.

Anyway, sorry for the short post.

It has almost been a week since my last post, so I figured I better get on the computer to get a couple notes jotted down and post a few pictures that have been taken over the past few days. Kristen's mother, Carol, came into town on Wednesday and they quickly got to work in the kitchen to get a few things made for Thanksgiving. We brought in a pie and bagels and coffee for the NICU staff on Thursday morning. Everyone seemed very appreciative, but it was the least that we could do for such a great group of people. They are our second family right now and we wanted to bring them something to munch on when they had to be away from their families on Thanksgiving day to take care of our little one. After a short visit with Reid, we got on the road and headed up to South Carolina to visit my parents. Jennifer (my sister), Todd and their three boys were up there as well, so we had a nice visit and a yummy Thanksgiving dinner. We headed back to Atlanta on Friday after a short stay.

Reid, our little turkey, has been gobbling up his milk and is up to 5 lbs 13 oz. While I thought he looked like a "real" baby when we first got him into some clothes, he is really looking like a newborn child now with his extra weight.

His lungs are continuing to grow and has made some improvements over the past few days. His bubble CPAP has been lowered to level 4 and his oxygen requirements continue to lessen. Talking to Dr. Metcalf yesterday, he thought that he might try Reid on the high flow nasal cannulas in the next few days. We are ready to see him without the CPAP gear on his head, so this will be a welcomed change. Reid seems to be a little more agitated with the CPAP and has an easier time pulling it out of his nose. In fact, the hats that the therapists use to hold the equipment on his head are a little too small now and don't seem to work as well. My mom took one of Reid's own hats and attached the velcro strap to it and it seemed to work well yesterday. Being the domesticated guy that I am, I sewed a strap onto another one of his hats this morning. Kristen laughs at me that I know how to sew... but I think it is just a cover-up as she is jealous that she doesn't know how to sew herself. :)

Reid was to have hernia surgery this week, but looks like Dr. Metcalf wants to hold off on this now. His hernias are a little easier to reduce and they would like to wait as long as possible before they do the surgery. He will have to be intubated for the surgery and are worried that this may cause a step back in Reid's respiratory progress. Long story short, we are glad that it isn't going to be this week as I am heading out of town again this week. I am in DC until Wednesday and then flying to Chicago for a leadership conference that I was nominated for. I am one of about 350 in Accenture North America (composed of about 35,000 people) that got chosen, so it was nothing that I wanted to miss. Not sure I am overly excited to leave town again, but it should hopefully be a good networking event for me.

Reid has a follow up eye test again tomorrow. We are crossing our fingers that we will have the same result as last week with little or no growth. I will do my best to update the blog tomorrow evening with the results. Hope everyone had a relaxing and enjoyable Thanksgiving!

Back to rainy DC... ugh. I am starting to think that the rain follows me wherever I go.

Tonight, I am going to attempt to put together some secondhand notes about Reid... they are all coming from Kristen and I have to admit that she is quickly starting to know more about Reid's conditions than I do. Everyone commends me on how much I remember and how much I try to digest what the doctors tell us, but Kristen sure pulls her own now. :)

Kristen had her friend Teri in town this weekend from Dallas, so while they went out shopping yesterday, I took a trip to the NICU to have some father-son bonding time. I spent about 2 hours there, changed a dirty diaper and had a pretty non-eventful visit. Since Kristen didn't see him yesterday, she was chompin' at the bit this morning when I got up at 4:30am to go see him. She did wait, but she was there right at 8 when they opened back up after the shift change. She had a fairly stressful visit as his respirations were high, oxygen requirements were high (60%) and his temperature was low (96.8). Fearing another infection, the nurses did a CRP test to see if there was anything that was not normal. After a painful hour long wait, the results came back... and there was nothing out of the ordinary. Appears he was just cold and they wrapped him back up and put him under the heat lamps. After he warmed up, things started getting better and he returned to his normal self.

She went back to the hospital around 5pm and had a much better visit. He bottle fed, and overall, was just a happy baby... full of smiles. Dr. Benedict came while she was there to do the eye exam (which we have all been stressing about) and when it was all said and done ----- no new changes. In fact, when Kristen asked if laser surgery was in the very near future, he answered "NO". This would be a huge break for us if the bad vein growth can come to a halt!!!

On a different surgery topic, Reid still continues to have difficult hernias to reduce. In fact, it seems more and more common to hear the nurses describe the difficulties of reducing the hernia, only to have to call the doctor to do it themselves. Knowing that they like to wait until kids are at least 10 lbs before they operate, Kristen and I have a huge fear of having Reid home and having to reduce the hernias ourselves. If the nurses have a hard time doing it, what makes you think that we can do it!?!?!? Kristen asked the nurse today about this, and she thought that hernia surgery may be in the near future (and we believe that the doctors have alluded to the fact as well). While I am hesitant to say that I would be happy that he would have surgery now, I am also secretly hoping that we won't have to face this issue after he comes home. This will just be one more thing that we have to worry about. So, long story short, while nervous about the surgery, I think it would be best if he did have it before his homecoming. Our biggest fear right now would be the transport to Scottish Rite hospital in Atlanta (http://www.choa.org/default.aspx?ID=841) and the possibility of him needing to go back on ventilator assistance during the surgery.

Hmmm... what else? His weight last night was at 5 lbs 6 oz. He hasn't been gaining all too much weight lately, but he did have some sizable gains the previous week. I guess they all even out over time.

His oxygen requirements still seem to be on the downward trend. While he did have some high numbers today, he was also at a point where he only required 35%. We like to think that these low numbers are contributing to his good eye tests. Keep up the good work Reid!!!

Well, I am going to sign off. Two people from my team are at the same hotel as me tonight, so we are going to try and venture into Old Town Alexandria tonight. The rain is coming down, but we are going to hop in the hotel shuttle and try to enjoy. will probably be a short evening as I have a 10:30 conference call tonight. Ugh. Anyway, thanks again for the prayers and keep them coming Reid's way! Good night.

It is Friday afternoon and I am ready to head home from the office. I got here about 7, but I still feel guilty for leaving at 4pm, so I am going to type up a quick blog entry and then head out --- and hopefully miss some of the rush hour traffic that commonly plagues the top-end perimeter area here in Atlanta...

Reid has had a pretty good week. While still on bubble CPAP level 5, his oxygen levels have come down drastically. Last week, he was in the 60% range, and this week, we have seen a trend to be hovering around 40-45 and has been as low as 30% today! At 30%, that is only 9% more than what you and I breathe on a daily basis!!! So, why is he still on the CPAP level 5? Good question… but the doctors really want to take it slow and wean him gracefully. They are expecting to, in the next few days to either move to Level 4 or to the nasal cannulas. One thing to note however, is that his CO2 levels are still really high. Today’s reading was at 78, but his body seems to be handling it well --- all of his levels as seen in his most recent blood tests appear to be normal. That doesn’t mean that the high levels are good, but talking to Dr. Lipsom today, she mentioned that it can take a long time for his body to get used to lower oxygen and start lowering his CO2. In fact, she said that he may still go home with high CO2 levels and he will level out over time. With that being said, there are a couple of things that they are changing: 1) stopped the diuretic medicine that he was on – which will contribute to higher levels of CO2; 2) possibly giving him calcium supplements – apparently, CO2 can cause calcium leaching of the bones. Long story short, he is progressing in the right way, and we are happy that his oxygen requirements have come way down.

He has been sleeping a lot more over recent days, however, this may be due to the high CO2. Apparently, this is a very common side effect. When he isn’t sleeping though, he has taken a trip to his in-room swing and seems to like it on the fast level. :) Also, when he is being held, he likes to have his bottom patted. Talking to one of the nurses, this is something that kids with Chronic Lung Disease tend to enjoy. So, Kristen pats away and he likes it.

Monday, he has a follow-up eye appointment. Still crossing fingers that the growth has slowed down..

Anyway... it is now 4:23pm and it is time to go. Been a long week and ready for a cold beer. Next week, I am heading to DC for three days and then it is time to relax with the Thanksgiving holiday. Woo Hoo! Enjoy your weekend!

Here are some random pictures. I am sure Kristen will hate me for posting this picture, but I just love the fact that she dug the "Chad is Rad" t-shirt out the other day and put it on:


This picture was taken Monday night after Kristen held him for about 30 minutes. He wasn't a happy camper that night, so we put him back in his crib where he decided that he was going to fuss and look around for a solid 30 minutes. Kept me busy entertaining him for awhile:


Luna is very interested in Reid's new play mat that Kristen picked up from Pottery Barn Kids the other day:


This picture was probably taken about a week and a half ago, but I wanted to show some context of how big he is. That is my wedding ring:

Yesterday, Luna (our indoor cat with no front claws) sat at the back door and meowed as he typically does during the afternoon, until Kristen let him outside (yes, Luna, a male cat with a female name). I don't have a problem with her letting him outside as long as she keeps an eye on him. He is usually a pretty good cat and stays within the fence, but as soon as you take your eye off of him, he is gone. This wouldn't be a story if Kristen didn't forget about him being outside yesterday (as she normally does); but she did. And he went missing. This time, however, he came back within the hour. Sometimes though, we go searching for him until we find him; other times he spends the night outside only to wake us up in the wee hours of the morning with a scream as he runs up the deck steps with another cat close on his tail. I typically give Kristen a hard time and ask her what she is going to do when she lets Reid outside to go play and then forgets about him. Is he going to come back on his own?

Well, I guess this all got to Kristen as this topic became a dream of hers last night. This time, it wasn't about the cat; it was about Reid. When she woke up, the first thing out of her mouth was, "I lost Reid and I searched all over for him and couldn't find him".

Where did she end up finding him, you ask?

In a shoe.

Only little Mr. Reid can hide in a shoe!! :)

^Kristen’s Blog Entry^

Reid had a very successful day of breastfeeding this morning. He nursed for a full 15 minutes!! He enjoyed it so much that we had to turn down his oxygen from 60% to 50%. I think I have figured out that 9:00 am is when he is happiest and most willing to try. Last night at his 9:00 pm feeding I tried and he wanted nothing to do with it. He possibly could have been worn out from nursing briefly that morning, drinking a whole bottle for lunch and enduring yet another eye exam. Poor little guy. Today though, upon seeing Reid's success, his nurse and and I did a little happy dance because we were so excited! This is exactly what I’ve been waiting for and what has made all of this pumping nonsense worth it.

The eye exam showed some new capillary growth but no new progress has been made. He is still in Stage III Zone 2 of ROP. This lack of progress is good and exactly what we have been praying for. His next eye exam will be next week so we will continue to pray for his eye capillaries to stay right where they are.

Reid also had a chest X-ray at 4:00 am this morning. His lungs are showing some improvements but according to Dr. Metcalf they also show us why he is still on the CPAP. Argh! His poor little nose is so bloody and irritated from all of the “scuba” gear. We just keep thinking that one of these days he is going to turn a corner and we’ll never have to see another CPAP ever again. It is quite amazing that he is breastfeeding and bottle feeding while having all of this gear on him. I don’t think a lot of the nurses (or doctors for that matter) have seen babies do this before. In addition, I think our doctors are more willing to try these feeds with Reid due to the successful studies Columbia University has completed on preemie babies and CPAPS. :) Thank you Columbia University!!

Reid continues to gain weight. Last night, he was at 5lbs 4oz and is now eating 42cc of 26 calorie fortified milk every 3 hours. And because of the volume, he spits up and poops just like a normal baby! :)

Other than breastfeeding, not much else is new in our little world. My friend Teri from Dallas, TX is coming to visit this weekend, so I can’t wait for that. And our friends Alison and Amit become official home owners tomorrow so I’m sure a celebratory glass of champagne will be drank in their honor at some point this week.

It is about 10:30pm on a Sunday night and I am trying to wrap up some work that I wanted to have done before my call with India in the morning... so, you would think that I would want to hurry up and get it done so I can go to bed, right? Well, I am trying to think of ten million other things that I would rather be doing (like picking up the mess of papers on the desk in the office that Kristen has been complaining about for a few days now, getting our insurance documents in order, etc). I am king of procrastination, so, here I am, typing up a blog since I have neglected to do one all weekend long. I will try to keep it short as I really do need to wrap up my 500th iteration of a project plan that keeps gaining more scope and more resources (my team is at 6 people now, adding one this week, and hoping to add one more sometime in December). Anyway, I digress...

His CO2 levels seem to be not improving. Friday and Saturday morning, he had levels in the 80s (which we hate to see). Today, they came down to around 75 and he will have another blood test in the morning. We are desperate to pinpoint a reason as to why they aren't improving, but we have been told, it is all a part of his Chronic Lung Disease. :(

Our little monster is just over 5 pounds. :) On Friday night, he weighed in at almost 5 lbs 1oz. Last night, they weighed him and he had "marginal gains", so, I am guessing he is about 5 lbs 2oz today. He is eating like a champ and ate out of a bottle today for the first time. He took his entire feeding at noon today (40cc of 26 calorie fortified milk) by bottle. This is a giant step for him as he was able to suck, swallow and breathe without his oxygen saturation jumping all over the place. Of course, when we went in at 3pm, Kristen tried breastfeeding (which had no success) and then tried feeding with the bottle. He took about 15cc by mouth until he got too tired and passed out on his mom's lap. The remaining 25cc went through his feeding tube.

He is definitely starting to grow though and we see changes every day. He is able to move a little bit more which happens to cause more pain for his nurses. For example, he hasn't had much luck with his IV for his antibiotic over the past 2 days. In three days, he has had 3 new IVs -- the first 2 went bad on their own, and the third one, which was a really good IV, he pulled out himself. :) When the nurse went to find a new vein for the next IV and was in the middle of sticking him, he pulled his CPAP gear off his face. Caught in a bind, the nurse had to pull the "code" alarm to get someone to come in and help her. Everything ended up fine, but he doesn't like making things easy. :)

Speaking of his antibiotic... we haven't seen any changes with this supposed infection he has. His second blood culture and his spinal fluid culture have yet to yield a growth. Only the first blood culture has shown anything and while we would like to think that maybe there was a possible contamination of the first sample, this type of bacteria is not typically known for that. It had to have come from him. Nonetheless, having to have an IV is a pain for him and for us and he has another 10 days to go.

Hmmm... what else (I am trying to procrastinate, remember)? Oh, today was our first time trying to "reduce" his hernia. Can I tell you how much fun that is?!?! Well, it's not. Pushing an intestine back through his abdominal wall and watching him turn beat-red and crying is not fun. The nurse had a hard time reducing his left one, so she was going to have the doctor look at it later. All the while, I am thinking to myself, how are we going to do this when he comes home? Can't they operate on this before he comes home????

And one last thing before I sign off... he has another eye test tomorrow. Please say your prayers for him tonight as we are hoping that the vein growth in his eyes has slowed down or stopped. We are getting close to a decision on his laser surgery...

I have pictures that I want to post, but seeing that it is almost 11 and I need to finish work, I am going to have to get to these tomorrow. Hope everyone had a great weekend!

I am sitting on a very bumpy plane right now and can't get a quick nap in, so I figured I would use my time wisely and put together a recap of what felt like a very long and stressful few days in DC. Going home is always the best part of the trip and I am anxious to see Kristen and Reid. Would like to go to the NICU tonight, but my 10:30 call with India tonight is in my way. Ugh!

Reid continues to have a lot going on as today he had a spinal tap done. The first blood culture has shown the klepsiella (spelling??) bacteria - which he had once before. Since this bacteria has the capabilities of traveling through the spine and brain, they went ahead and did the spine puncture. Initial results of the fluid look good and don't show signs of an infection (as seen by sugar and protein levels). They will continue to grow the culture to see if it yields anything. The second blood test has yet to produce anything, so we are starting to get a little more optimistic. They have switched antibiotics and he will moat likely be on these for the next 14 days. The one that he started a few days ago has no affect on this bacteria.

Another eye test will be done next week. He has a 50-50 chance of needing corrective laser surgery and this has had me stressed out.

On a more positive note, his CO2 levels were down to 65 and the best it has been in a week or so. We are hoping that a CPAP level 3 is in the very near future.

Well, time to wrap this post up as we are landing and I am not supposed to be on the phone. Feels good to be back home. More updates and hopefully some pictures to come this weekend.

It's been a very long day today that started at 4:30 this morning. Got on a flight at 7, at the office in DC by 9:15, left the office at 8 pm to grab dinner, on an hour long call at 10:30 with my offshore India team and just now sitting down to relax. Was hoping do some quick browsing on the web, but for some reason, the Internet doesn't seem to be working in my hotel room. I must admit, after pretty much living at a Westin for 2 years between Texas and Colorado, these Hilton's just don't even come close. :)

I am going to try and make this entry a short one as I am having to post this blog over my iPhone.

Blood test did come back positive for a gram negative rod bacteria. This is usually something like E. coli that is easily passed. Since the doctor doesn't notice anything overly wrong with Reid's behavior or temperment, he ordered another culture to see if the results were correct. Should know more in 24 to 48 hrs. If positive, he will have a spinal tap to see if there is an infection in his spinal fluid. If so, the duration of the antibiotic will be longer. We aren't looking forward to him having the tap done but they will administer a localized pain blocker to ease the pain. He also had a urine test today that came back negative - no urinary tract infection.

Hematocrit levels were up to 39 this morning after his blood transfusion. 40 is optimal, so he is pretty much back on target.

Eye test was this afternoon. It showed some not-so-good capillary growth. While very minor, it wasn't what we wanted go hear. They will continue to test weekly and hope that the irregular growth will stop. We have to start catching breaks soon, right?

Hernia is now on both sides. His right side was the first one for the past few weeks, but they noticed the left side in his scrotum today. They were reduced, so there was no immediate concern - frustrating nonetheless.

On a different front, the glider and gliding ottoman for Reid's room arrived today. We ordered them about 4 weeks ago and was supposed to take 10, so it was a plesent surprise. Will try and pick them up this weekend (the store wants about $100 for delivery, but think that I can rent a truck for much cheaper). Part of me thinks that I should just fork over the $$$, but I am trying to wear my frugal hat these days now that Kristen and I are officially debt free. We have had a ton of expenses this summer/fall between medical bills and getting the house ready for Reid, so, to be debt free is pretty good in our books right now!!! We refinanced on the house yesterday, so the extra $425 a month that we are now saving is going to be a nice addition to our savings accounts (Kristen is probably thinking about all the shopping she could do as she reads this). :)

Ok, this post was much longer than I had originally set out to do, so I will end it here. Time to hit the sack. Good night from DC.

Update: Reid doesn't have an infection - just a low blood count. He had two IVs put in this afternoon and is now receiving a blood transfusion. We have lost count of the number of transfusions he has had, but please let this be the last one. Hopefully we will see a bright-eyed and bushy-tailed little Reid tomorrow. :)

No word on the ECHO as of yet; will post when we hear something.

It’s been a few days since our last post, so I will try to recap the past few days...

Kristen and I took a short trip up to my parents house Saturday after we had spent about 3 hours at the NICU that morning. Kristen has a little bit of anxiety leaving town and leaving Reid behind, so we it was a struggle to say goodbye to Reid and jump in the car and head out of Dodge. We finally made it up to South Carolina around 2:30 and spent some time with the family (Shannon, Brian and Evelyn were there as well). It was a short trip and we were back in Atlanta yesterday afternoon. We spent the majority of the afternoon trying to catch up on the rest of the "crap" that seems to rule our lives (getting ready for work, raking the leaves that seem to never cease falling from the tree, etc).

Anyway, we made a trip to the NICU last night - which was a necessary trip as Reid was running short of milk. Our freezer has been piled high with bottles of milk for awhile now, so we decided to cram as many bottles as we could into the cooler and inundate the NICU with lots of milk (their freezers are bigger than ours). We had a good visit with Reid and had a nice, long conversation with Thomas, his respiratory therapist. We asked him ten million questions about how to prepare our house and get it ready for Reid. He suggested to have our ducts cleaned and in addition to changing the filters on a regular basis, also put filters (hogs hair) in the return vents to act as a pre-filter. We asked him questions about the cat, carpet, humidifiers, and need for air purifiers…. To which he replied that Reid needs to get used to his new environment when he comes home and that we shouldn’t modify anything at this point. We also asked him about having a live Christmas tree --- to which he replied, “Reid likes to smell as well”. So, overall, no big suggestions on how to get the house ready for quality air, so it was encouraging. We did ask him to take a bet as to when he would be coming home and he suggested January. This was not the answer we were looking for, so Kristen quickly told him that he was wrong and that it would be before Christmas. :) All joking aside, it is all up to Reid and anything the therapists or doctors suggest is all a guess.

Reid is still doing well and has gained a lot of weight over the past few days. He is currently at 4 lbs 14 oz and barely fits into some of the preemie clothes that we have. A growing baby isn't a bad thing... but I think Kristen is a little upset that he isn’t able to wear some of the clothes that she has been dying to see him in. However, he did sport an outfit last night that swallowed him… even with the sleeves rolled up, he seemed to be a little lost inside. His feedings are now up to 36cc every 3 hours.

His CPAP has been lowered down to level 4 (which means that there is less pressure being pumped into his lungs). He seems to be doing OK with the change (breathing-wise), but the nurses have noticed a slight change in his body. His CO2 levels seem to be slightly elevated and he is having a harder time maintaining his temperature. He also seems to be sleeping a little more than normal and doesn’t seem to be bothered by some of the things that have bothered him in the past. Some of us may be asking… “isn’t this a good thing?”… but this change, in addition to his temperatures, makes them wonder if something else might be going on. With that being said, they have ordered a CBC (Complete Blood Count) and CRP (C Reactive Protein) test. The CRP test can show elevated antibody levels (which will show as proteins in this test). If elevated natural antibodies are present, this could be a sign of an infection. Coupled with a low body temperature (which is opposite of how adults show infection), they will then do a blood culture to see if there is in fact an infection. We have been told not to get worried just yet as they are just being cautious and taking all possible measures to be proactive. However, if the antibody levels are high, they will start Reid on an antibiotic until the cultures are returned. We should know more this afternoon.

Reid also had a ECHO this morning and we are waiting on the results --- which should also be this afternoon as well. One thing to note is that one of his low temperature readings was right after this test was completed. Since he was uncovered for quite some time, this could be the culprit.

His fourth eye test will be tomorrow; he will be having them weekly until his eyes are mature enough to see if there are going to be any adverse effects of the high oxygen levels he has been on for the past few months.

Anyway.. not much else is new. I will make a follow-up blog entry tonight with the results of the blood test and the ECHO.