First Bath

Reid had his first bath today. That's right, two months without a bath. :)

Unfortunately, I was unable to go to the hospital for the bath... and to be quite honest, I didn't realize that it was that big of a deal. That is, until I saw all of the pictures that Kristen brought home. I guess there will be many more baths to be had, but it would have been cool to see nonetheless.

Kristen said that it took about an hour from start to finish and said she was sweating 'like a pig' after it was all over with as they have an overhead heater so that he didn't get too cold while in the water (so, maybe I am not too upset for not being there after all). When it was all said and done, there was a bucket of dirty water and a clean baby. So clean that his hair is apparently a lighter shade of brown. :)

Other news? Reid has been going back and forth between the nasal cannulas and the CPAP. It seems that when he is on the cannulas for an extended period of time, he has to work much harder to breathe than when he is on his CPAP. For example, he had CO2 levels in the 80s yesterday, but after being on the CPAP for more than 12 hrs today, he was back down to 66 (just a tad north of 'acceptable' levels). He just isn't quite ready to be on the cannulas for extended periods, but he will be on them for times when we hold him. We have to keep reminding ourselves -- baby steps. We have noticed, as have the nurses, that he is a much happier camper since he is no longer on the steroids. Roid rage has come and gone.

On a different front, he got his first musical CD today. Alison (our music-professor-friend at KSU) had suggested some classical music for Reid and I burned the CD last night. We had the list of songs for quite some time, but I just never got around to putting it all together. He likes the music --- as do all of the nurses and even Reid's roommates parents -- apparently Alison has a good ear for music. :) On top of his fondness for classical music, he also enjoys and smiles when the cricket noise on his crib mobile plays its thing. Who ever thought that someone would actually enjoy the sounds of crickets?!?!?!?

On the weight front, he is up to about 4 lbs 6oz. As you will see in one of the photos below, he has a little 'Buddha-belly' growing.

Anyway, hope you enjoy the pictures (clicking on them will make them larger):

Well, Mr. Reid has had an eventful couple of days. He is tolerating the high flow nasal cannulas really well and is continuing the 12 hour rotation with that and the CPAP. In addition to being dressed for the first time this weekend, he was also moved to a crib. While his new bed looks like something borrowed from a mental institution, it does have a cute mobile attached to it that plays soothing music. So far, Reid has not shown any interest in this.

Thank you to Lara for the super cute "All Star" outfit! All of the nurses have come in to check out Reid in his new "home" and see him in clothing and more than once we've heard: "Finally! He looks like a real baby" :)

Last night Chad got to administer Reid’s breathing treatment for the first time with the help of Thomas the Gentle Giant (respiratory therapist). Chad had to prop Reid up so that he was at a 45 degree angle and then hold a mask over his face while the treatment worked its magic. Chad did a great job even though our poor little guy did not like it one bit. When he is on the CPAP the treatment is directly administered into one of the “scuba” tubes so Reid really doesn’t notice it. However, having to be propped up and deal with a mask held over his nose and mouth while medicated vapors blow in his face did not sit well with him at all. But sooner or later I’m sure he’ll get to use this as he will more than likely be coming home with this type of treatments. As he gets older, this will definitely become a two person job, but Chad had it all under control last night. Reid also tried “recreational breastfeeding” today. The goal was to see if he could latch on and suck but he wasn’t too interested in that either. We (Chad and I and the nurses) thought that since he loves his pacifier so much that he would do well at breastfeeding too but apparently there is a big difference between the breast and the pacifier. :) We will keep trying and hopefully one of these days, Scuba Reid will figure it out.

We will leave you with a few more pictures and a couple of videos we took last night. Enjoy!

Reid has had a few changes over the past few days, so I thought I would type up a blog as I sit here holding him. Kristen had planned on pumping while we were here visiting, but realized that she had forgot two critical pieces of the machine at home, so she had to run out to get them. That leaves me with Reid for some father/son bonding time. :)

They have made a slight chage with his breathing apparatus: instead of the high flow nasal cannulas just when we hold him, they are now trying 12 hrs on and 12 hours back on CPAP. So far, he seems to be tolerating it quite well.

They have also increased his feedings to 32 cc every three hours. He is getting bigger and is requiring more nutrients and instead of just giving more volume, they are fortifying it to 24 calories (his stomach can only handle so much).

Today is also the first time we have seen him in real baby clothes. Sandra, his nurse, picked out a baby blue and white onesie (I will have to upload some pictures later today), so it was definitely a treat when we walked in his room.

Other than that, not much is new. We went over to Jim and Lauren's yesterday to watch the Dawgs get killed by Florida 41-17. UF has our number and seems like this is an annual occurrence. :( Today, we are going to drive up to the north Georgia mountains as soon as we are done here at the NICU. It is a beautiful day today and we are going to make use of it. Hope everyone had a good weekend and a Happy Halloween!!

Happy Halloween (Almost)...

Please note that I (Kristen) am writing this blog today as Chad is super busy with work, so please forgive the lack of details and medical jargon that you are by now probably used to. :)

The great thing about this week is that while I get to hold Reid, he gets to use high flow nasal cannulas rather than the bubble CPAP. I think he loves this just as much as his mama. As you can see in the pictures it is much less cumbersome and we get to see his face (and able to put cute little pumpkin hats on him)! He does quite well on this apparatus: he maintains his saturation and his oxygen only has to be increased a little, which the respiratory therapists say is to be expected.

I think Dr. Metcalf and the nurses can sense our impatience with the slow progress we have seen over the last few weeks as they keep reminding us of the positive steps that our “little nugget of love” as Aunt Erica likes to call him, is taking. He now weighs a little over 4 lbs. He is retaining quite a bit of water so we’re not sure how accurate this weight is. On top of his Lasix he is now being given two other types of diuretics to help get rid of this water that the steroids are making him retain. He is doing a great job with his feedings and the breast milk is being fortified with two more calories per ounce making it a grand total of 24 calories per ounce. Dr. Metcalf said on Tuesday (with much affection) that Reid is a “slow poke” with his own schedule and that it would be best not to rush him as we don’t want to take any steps backwards at this point.

Yesterday after I finished holding him, Rachel put Reid back in his little bed and he was not a happy camper. She did her best to make him as comfortable as possible by laying him on his tummy with his head facing the right, and for a minute he was satisfied. As soon as she walked out the door though he started crying and wiggling around so I turned around to put my purse in the chair next to him so I could have my hands free to help him get comfy again. In that split second of turning around he had managed to turn his head so that he was facing the left and was as peaceful as could be. I guess he thought that since he couldn’t tell us what he wanted, he would just do it himself and proving once again that yes, he is definitely a feisty and determined little boy!


As long as Reid can handle it, he will continue to use the high flow nasal cannulas while being held and then the next step would be to rotate the CPAP and the cannulas every couple of hours. We will just keep doing what we are doing though until Mr. Reid tells us otherwise.

Sunday will be his last day of steroids so he will finally be able to get rid of his IV and hopefully we will be able to start putting some clothes on this big guy!! I have them all washed and ready to go and can't wait to start dressing him in all of the adorable clothes that our friends and family have given us.

Looking at the blog over the past week or so, I have noticed that it has gotten a little boring. Maybe it is the person who writes the blogs that has gotten a little stale or maybe it's the fact that not much is new in Reid's little world. I guess maybe I need to think of something a little more creative to talk about???

Hmmm... How about Kristen's silly nicknames that she has called Reid??

1. Baby cakes
2. Scuba Reid
3. Cookie Monster
4. My little baby
5. My little kitty
6. Sugar plum
7. Baby cakes

Number 4 and 5 are usually used like, "how's my little baby today" or "look at my little baby". However, she commonly says this to Luna (our cat), so sometimes when we walk into the NICU, "how is my little kitty?" comes out of her mouth. :). I did tell her though, that some of those nicknames will have to stop when we take Reid out in public. If I heard someone say "hey there sugar plum" while at the grocery store, I think I would gag.

So, what else is new? Kristen is still struggling to finish organizing all of Reid's clothes. I don't think we both realized how many items of clothes that kid has and she has washed over 8 loads. The newborn to 3 months and 3 to 6 months has all been hung in the closet or folded and put away in his dresser. The rest of the clothes has been sorted, folded, and put into 2 large bins that she picked up at Target the other day. I honestly think that we can make it a long while before we even start to think about buying new clothes. However, knowing Kristen's obsession with clothes, I have a hard time believing that we will make it more than 2 weeks after he comes home. :)

Last night, I put together his swing that Grandma Hart gave him for his shower. If I had a dollar for ever curse word that came out of my mouth, I would be a rich man. It wouldn't be that difficult to put together if the Chinese manufacturers of these things invested a little money in English-speaking translators and illustrators who could draw something that more closely resembles what I am trying to do. Showing a diagram from the 30,000 foot level of something that requires a magnifying glass to accomplish doesn't help either. I am also realizing that I should start buying stock in Energizer batteries. EVERYTHING takes 20 batteries to operate.

Been a pretty uneventful Saturday so far. We took Kristen's iPhone into the Apple store because she could barely make a call. They gave her a new phone, so we will see if this one works a little better?? We are still undecided with what we are going to do tonight. I wouldn't mind going out, but staying in on this dreary day might not be all that bad either. Some hot soup and some wine may be in order. :). Hopefully we will have better luck with our wine tonight than we did last night as we opened a $60+ bottle of Cakebread Pinot Noir, only to find out that it tasted like vinegar. The cork had some leakage, so we lucked out with a bad bottle. :(

Anyway, not much else is new. Reid is still on bubble CPAP level 5. His oxygen level is 52% at the moment and has unfortunately had some high CO2 readings today. He will most likely be taking a diuretic this evening to help get some of the fluids off his body that the steroids are helping retain. This will reduce the puffiness in his face and also help with his breathing. But for the most part, Reid is stable and hanging in there. Last night, he weighed 3 lbs 9 oz.

Hope everyone is having an enjoyable weekend!!

A quick flight home tonight and came straight to the hospital. Feels good to be back as it was a long couple of days. I counted 13 hours that I was in my hotel room since Tuesday and was at the office until 2am last night. Oh how I have missed Accenture work!!!

Not much is new with Reid. His arterial line came out today, so he is officially a free man - no more IV fluids!!! He still has one IV in his right hand for the various medicines that he gets, but for the most part, his bed has been freed of a cluttered mess of tubes. Because of his freedom, they took the bed scale out and will use the normal scale going forward. He weighs around 3 lbs 9oz.

Bubble CPAP hasn't changed and he fluctuates on his oxygen needs depending on how grumpy and agitated he is. Kristen and I both had lofty goals of getting him off this apparatus this weekend, but we think he still has a while to go. Neither of us have patience, so this is killing us. :)

Anyway, time to head home. It is nearing 11pm and I have yet to eat dinner tonight (I am about to gnaw my arm off I am so hungry). Looking forward to sleeping in my own bed tonight and even more so to the weekend...

Just wanted to get a quick post out there before I board the plane to DC. Sure, I have traveled many times before for work and have left Kristen behind, but today is different. Not only am I am leaving Kristen, but I am now leaving *my family* behind. While the two of them are going to be completely fine for the two short days that I am gone, it just feels strange. I have a larger responsibility now and I feel guilty to leave them behind.

On a different note, while Reid's numbers really haven't changed that much over the past few days, he is turning into a new person. He has left behind his agitated self and has become a wide-eyed little man that smiles at his mom's silly talking. Kristen spent a solid three hours with Reid today and enjoyed every minute of it! I think we have finally left the stressful hospital visits behind and are now able to start that fun bonding process parents usually do right after their babies are born.

His feedings reached his new maximum of 30cc today. In addition, his milk is being fortified to add some additional calories. Pretty soon, we should start seeing a 2 ounce a day gain and a change of scenery as he moves into his crib. He is leaving his tiny little body behind!!!

Well, it is time to get on the plane. Lucky me, I have an exit row and this flight pushes me over the mile threshold for a free round trip ticket to Europe. Now if I just had the time to take the trip...

I know it is time to post a new blog when I start getting bombarded with people asking why there hasn't been any posts in a few days. It was a fairly busy weekend with Kristen's baby shower. The lack of posts may also be due to the fact that there hasn't been a ton of changes for Reid other than the fact that he seems to be a much happier camper and enjoys sucking the heck out of his pacifiers.

His oxygen levels have come down and are hovering around 50%. His CPAP levels have also come down and is currently on level 5. He is now getting blood gas tests every 12 hours and when his CO2 levels come down a little they will start weaning the CPAP even further. Dr. Metcalf hopes to be able to move to the high flow nasal cannula within the next week, but is obviously dependent on Reid's progress. He is getting close to the age where they can start to attempt breast feeding, so they are anxious to get him off the CPAP as well.

Reid had his second eye exam today and Kristen was actually holding him when the doctor performed the exam. Not the nicest thing to watch as they dilate his eyes, put in a metal contraption to keep his eyes open and then a metal probe that makes the eye come to center. The doctor has this funny looking gear on his head (similar to what night vision looks like) and then uses a magnifying glass (on top of the magnification his gear already has) to look at Reid's retinas to check on the tiny blood vessel's growth. Prognosis: eyes are looking good but are still premature. He will have a follow-up exam in about another 2 weeks.

Reid had some good visits over the weekend. Not only was he held by Kristen and me, but his Grandma Elley as well. My mom was just tickled that she was able to hold her grandson!!! When Grandma Hart makes her next visit, Reid will be ready for her to hold his as well.

Not sure of what I think about this whole work thing that starts again tomorrow... I have been able to come and go as I please pretty much all summer and visit Reid when I wanted, so it is going to be a big adjustment for us all. Kristen will have to start visiting during the day by herself and I will have to make my visits during the evening. We will start having a more strict schedule around the house (which might not be a bad thing). No more going to bed at 1am and waking up at 9 in the morning. :)

I head out of town tomorrow night for a quick two day visit to DC and I think Kristen is going to spend the week sorting through all of the wonderful gifts we received over the weekend. In addition, she will be washing and putting away the 2 tons of pass-me-down clothes we have received from the Williams and the Hamer families. Reid will definitely be one of the best dressed kids on the block!!! He has some great clothes to wear when he comes home as well as ones he will need to grow into.

Not much else is new right now, so I will close this post with a big thank you to the Elley's, Williams' and Pagel's for the great baby shower they hosted for us. Also, a big thank you to our friends and family that were able to join!!

I would like to take this time to reintroduce the one, the only...

SCUBA REID



Congratulations and welcome back to the bubble CPAP little man!!!

This morning and early afternoon, the doctors kept weaning Reid off the ventilator and finally got to a point where they were ready to pull him off. When we got to the NICU around 3pm, he was on 100% oxygen, level 7 CPAP and had just had all of his IVs replaced. He wasn't a happy camper, but he had just had a bunch of stuff going on. They had given him some medicine to help his throat feel a little better and to help with the raspiness of his vocals.

It is a GREAT day for the Elley family!!!

Oh, and before I forget, he was weighed again last night and was at 3 lbs 6 oz and is currently feeding at 17cc every 3 hrs with a max of 25cc.

Today tops off a few solid days of progress with Kristen being able to hold Reid for a good 2 hours. His ventilator has been changed so that it is only giving him 15 breaths per minute and is allowing him to take anything over those 15 on his own. Needless to say, he is doing awesome!!! His feedings are up to 13 cc every three hours.

While making steady progress over the past few days, Reid has seemed agitated. He seems to turn bright red at the drop of a hat and for no apparent reason. In fact, it has the doctors and nurses scratching their head as to why. Dr. Metcalf thinks it might be from the steroids that he is on and jokingly called it "roid rage". :)

A little bit of bad news today though... Reid has an "inguinal hernia". Doctors say that about 1 out of every 3 premature males have this problem and will require surgery. We have a little while until it needs to be fixed, but they aparently dont like to operate until they are about 10 pounds. Supposedly it is a very minor "outpatient" surgery to sew up the inguinal canal to prevent the intestines from protruding through the abdomenal wall. A quick Google search defines the issue: "As a male fetus grows and matures during pregnancy, the testicles develop in the abdomen and then move down into the scrotum through an area called the inguinal canal. Shortly after the baby is born, the inguinal canal closes, preventing the testicles from moving back into the abdomen. If this area does not close off completely, a loop of intestine can move into the inguinal canal through the weakened area of the lower abdominal wall, causing a hernia." Ugh. If premature babies had a checklist of everything that could go wrong, Reid is quickly checking things off his list.

Anyway, on a brighter note, I will leave you with a few pictures and videos:

Kristen and I visited for about two hours last night because we were so facinated with watching him attempt to suck on his ET tube and eventually the small pacifier the nurse gave him. I think he went to town on the pacifier for a good 30 or 45 minutes, pressing his hand that was wrapped in gauze up against his mouth as if he were purposefully trying to keep it in. It seems that in the past three days he has learned this sucking thing and it is fun to watch!! If we can remember to bring the camera in, I will try to record a short video.

Reid has his first girl roommate and her name is Barbie. Despite the interesting name, she is a very cute little Hispanic girl. I am trying to teach Reid some pick-up lines in espanol. :)

On the respiratory front, Reid was turned off the nitric oxide around 1:00pm today. He is looking good at the moment and he will have a blood gas test done shortly to see how he is hanging in there. If things look good, his breaths per minute will be dropped down to 20 this evening. And assuming that goes well, he will be switched onto the next mode on the vent tomorrow to even further reduce his dependence on the vent. The end is in sight for this machine, but just talking to the respiratory theripist, she is not in any rush to wean him, "it is up to God and Reid as to when a change is necessitated".

His weight dropped slightly yesterday down to 3 lbs 4 oz. He had a diuretic yesterday that helped clear off some of his fluids he had been retaining.

Anyway, all seems to be well here in rainy Atlanta... Kristen had her six week checkup this morning and all is well. I took the BMW into the dealership and had the wonderful $100 oil change done (even with the $35 off coupon). There may be a few more errands to run, but will most likely be a quiet afternoon (my last Wednesday on vacation).

Another quick update: Reid's nitric oxide is down to 2% with 48% oxygen. If he can maintain this level with saturations in the 90's, they will take the nitric down to 1%. Talking with Dr. Metcalf earlier today, he hopes to hang up the nitric within 24 hours. And once Reid can get down to 20 breaths per minute, they will change the setting on the vent to only give him 20 breaths per minute with no assistance on any other breaths he may take on his own. Right now, if the setting was on 25, Reid would still get the assistance on any breath he takes over 25. I am personally hoping to have him off the vent by the end of the week --- it just all depends on how well Reid hangs in there with less support. However, Dr. Metcalf seems otimistic that Kristen will be able to at least hold him by the end of the week. We are still taking baby steps but he has taken a few "adult steps" this week. As my dad said earlier tonight, "we couldnt' be more proud of Reid"!!! :)

We took homemade chocolate cookies into the NICU today that we baked last night and I think they went over well. We are going to bring in some sugar cookies next week at some point so hopefully more than just one set of doctors and nurses can enjoy. :)

Well, I am going to wrap this entry up. Kristen and I just cracked open a bottle of pinot noir and are cooking the same dinner that Shay and Justin cooked for us on Saturday night. We enjoyed it so much, we had to have it again!!!

Reid had another good night last night. His oxygen levels are down to 35, his breaths per minute are at 26 and his nitric oxide is at 8. Dr. Metcalf is in the NICU today, so we are hoping that there are some further changes with his vent since he is doing so well. Mr. Reid is apparently not enjoying his tube anymore -- even with the versed and morphine. They think that he is finally feeling better now and has the energy to fight having the tube. Anyway, just wanted to get a short update out there. We will be heading to the hospital a little after noon...

A quick update: oxygen levels are down to 44; his nitric oxide is down to 12 with a possible further adjustment at midnight tonight; his breaths per minute are down to 30. He is making fantastic progress, just taking a little bit of time to wean him down in preparation for his CPAP.

Been cleaning the house tonight -- we have an appraisal tomorrow (we are in the process of refinancing our house) and we have Erica and Linda coming in on Thursday for the baby shower. Somehow, Reid's room was the messiest and he doesnt even live here yet. :) My other fun task for the evening was sanding and painting the wooden letters that spell out REID for his room. I wonder how many coats of paint these guys are going to take??? But when you can't find them in the colors you want, you have to take matters into your own hands and do it yourself...

Anyway, bed time for us. Que sueñes con los angelitos. Buenas noches.

Pictures

I realized that I hadn't posted too many pictures lately, but in my defense, it has been a little hard when Reid has been covered up and the room he is in is nearly pitch black. He is a very sensitive little boy, so the nurses do everything in their power to keep it dark and quiet in the room --- lights off, alarm sounds turned down, whispering while in the room (more common to hear squeaky shoes than the voice coming out of the nurses/doctor's mouth), and this sign that has been posted on the curtain that has been pulled right in front of the door:




And here are two other random pictures. His perfect little toes and his mom's giant hand:

Kristen went to the NICU today by herself as I had the cable guy out here for the 4th time in as many weeks. Seems like we can't have the internet up and working for more than 24 hours in the house. Can it be that hard to deliver internet service?!?

Anyway, no first-hand account from me today, so we will have to rely on Kristen's word. Kristen doesn't do well with numbers, so not sure how accurate my blog is going to be today. :) After she left the hospital today, the conversation between her and I started off as, "Reid weighs 3.76 pounds. Well, maybe he weighed 3 lbs and .76 ounces... I don't know." To which I assume that he weighed 3 lbs and 7.6 ounces. I have told her many times (even before we were even pregnant) that she will not be the one that is teaching our kids math. Kristen and numbers just don't mix all too well. :) However, I will not be commenting on my English or grammar skills; she has me beat in that subject!

So... yes, he has put on a little bit of weight since we last reported, but I will assume that some of that is water weight. With his always-in-flux medicine and fluids routine, the poor guy never has a "normal" day. Although, today, his feedings are now back in action. He has been receiving the 2cc every 3 hrs since yesterday and the new orders are to go up 1cc every other feeding. Don't ask Kristen to do the math, but that means that he will go up 4cc every day. :)

What else is new today? Hmmm... his oxygen levels are still hovering around the 50% mark, but they have weaned his nitric oxide (NO) down to 13. From what we understand, the NO is a hard one to wean as Reid will have probably got used to having it. I like to think of it like if you live in a low altitude and you go up to a higher altitude (like Denver), it is harder to breathe. While the oxygen level percentages may be the same, your body has to work harder at getting the same level of oxygen into the blood. While this isn't exactly the same in Ried's case, it is similar -- his lungs will have to work harder because his capillaries and vessels in his lungs aren't as dilated when he comes down or off of the NO (for those respiratory therapists that are out there reading this, sorry if I have gotten that completely wrong).

On a totally different note, Kristen said that Reid was sucking on his ET tube today -- so much so, that she could hear him smacking. He is getting older (32 weeks on Wednesday) and will be soon developing the coordination to suck and swallow simultaneously. This would be great if he would be able to either breast feed or take a bottle, but being on the ventillator and hopefully the-soon-to-be CPAP, he will not be able to. We will have to wait until he is on the high flow nasal cannula (HFNC) before we can even start to think about it...

That is about it for today. I am having a harder time thinking of things to write about, so I guess that means that Reid is a little more stable these days. I am sure ya'll can live with less posts on the blog for a much happier and calmer Elley family. :)

It's been a busy day for Reid today. His arterial line (which measures blood pressure and also where they draw blood from) had all but pulled out and was hanging in by a thread. After a fussy night and not understanding why he was so upset they finally found the line and replaced it. They also pulled the IV off his scalp and placed it into his foot.

Feedings started again today. While small (2cc every 3 hrs), it is food and that makes Mr. Reid happy.

The vent has been adjusted and is giving him 34 breaths per minute (he is taking about twice as many on average). The nitric oxide is now down to 14.

His oxygen levels right now are in the lower 60s as he has had a lot of activity. The activity causes agitation which leads to him needing slight more oxygen. Earlier in the day, he had been down to the upper 40s and lower 50s, so he is still trending in the right direction.

Reid is much more active today and is flailing his arms and legs all over the place. It is a much nicer sight than the sedated look he has had over the previous three days. The nurses have really cut down on the versed and morphine and are not giving it to him on regular intervals anymore - just when he needs it.

Not much else is new. It has been a quiet couple of days for the Elley's, and we have enjoyed our weekend. A trip to South Carolina on Friday, dinner and drinks at Justin and Shay's last night (the best chicken tiki masala we have ever had) and we are heading over to Shannon and Brian's tonight to watch some Bronco's football and hang out.

A lot has happened since my last post, so let me see if I can capture it all:

Yesterday, during our afternoon visit, Reid had a little bit of trouble recovering from his "touch time" where they suctioned his throat, did an Echo, an xray, and moved him. His oxygen saturation had dropped down into the upper sixties and lower seventies while on 100% oxygen. The respiratory therapist then used the hand bag ventilator to manually give him some breaths of oxygen. His saturation shot straight up - so his lungs responded well to conventional ventilation (where the lungs are actually moving in and out). The doctor's theory was that due to the amount of mucus in his lungs (as seen by the collapsed right lung in his xray), the pressure of conventional vent was helping open his airways (something that the oscillator may not be best for). Knowing that the manual efforts worked, they used this information and decided to switch Reid off of the oscillator and back onto the ventilator that he had been on previously. He was doing much better on this and it was touch and go for a few hours as to see if this change was going to work. His required oxygen levels remained in the 90s all of yesterday, so it was a little nerve-wracking to have gone from 70% on the oscillator to 100% and then still hovering in the 90s.

With a little hesitation, Kristen and I headed up to visit my parents in South Carolina (about a 2.5 hr drive away). We were desperate to get out of town since we hadn't really left our 15 mile comfort radius from home in well over 3 months. We needed to have a break from all of the action, but were a little weary after all of the change. Nonetheless, we decided to head out of town. Pat, our nurse yesterday, gave us a little comfort though with the use of her iPhone - text messaging and some picture mail goes a long way. :) I love technology, so knowing that our nurse would use her personal phone to help us out meant the world to us!!

Not much change when we called in last night, but on the the call I made this morning to the NICU, we got a little more comfort:

- oxygen levels are coming back down and were at 83%

- his paralytic medicine hadn't been administered since yesterday afternoon. It will be nice to see Reid moving around again and hopeful that we will be able to see him open his eyes again! It is amazing what a little eye contact with their son can do for a parent. :) He is currently only taking his morphine and his Versed (to calm him down).

- there are doctors orders to start weaning the nitric oxide as soon as his oxygen levels start getting below 80% (another hopeful step in the right direction).

- he had a good diaper - his plumbing is still working. There are no orders yet for the feedings, but we are hopeful that with the change back to the conventional vent and the fact that he is off his paralytic, that the feedings are around the corner.

Kristen and I are going to enjoy a nice breakfast with my parents and make our way back into Atlanta. The news this morning was good news and puts us a little more at ease. Thanks again for the prayers --- they are working!

Just a quick post to let everyone know that Reid's oxygen levels have been bumped down to 70%. It is amazing what 24 hours can bring. His steroids must be doing their job. We are hoping for another quiet night tonight and axious to see what tomorrow brings us.

Just got to the hospital and Reid is staying strong. His oxygen is at 89% and his saturation is hovering around 92.

Erica asked today what it was going to take to get him off the oscillator, so some of you may be asking the same question. Number 1, his oxygen levels need to drop to somewhere to the 60 to 70% range. Once this has happened, they can start weaning the pressure on the oscillator. Currently it is at 18 and they need to get this down to 10 to 12. The pressure defines how large his lungs are inflated. Once they put him back on the vent, this pressure defines how much expansion will be made during every breath. A 12 on the oscillator equates to about a 24 on the vent. On the vent, they don't like going much above 24 as it can be traumatic on the lungs to be over-expanded with every breath.

It is going to be very small steps to wean him on the oxygen levels, so I am setting my expectations that there isn't going to be a whole lot of change over the next day or two. As long as we are heading in the right direction, we can breathe a little easier.

On a different note, Reid got his first scalp IV. His IV in his arm wasn't looking to good and was running out of spots for the nurse to place the new one. In addition, they didn't want to have to move him to get a new IV, so it is now on the side of his head towards the back. Not the prettiest thing in the world, but the nurse said he didn't even flench.

He had another xray this morning and there wasn't much change. The upper right portion of his lung is partially collapsed and is most likely due to a mucus plug that is blocking one of his airways. They shifted his body, which will allow the mucus to migrate. They have stopped the CPT in his chest (which helps disolve some of the mucus) as Reid doesn't tollerate it too well. They are going to wait until he is a little more stable before they resume that treatment. All in all, nothing earth-shattering with the xray.

That is about all the news for now... Your prayers are working, so keep them up.

Reid had a good night last night!!! Currently, his oxygen levels have come down to 95% and his saturation is hovering between 91 and 93; his CO2 levels have come down to 35 (really good). At 10:00am this morning, he will undergo his daily xray where he will be flipped onto his back. This whole process is a little traumatic on him, so we are hoping that he handles this well. After he settles in from the flipping and the xray and is able to maintain his saturation, they are planning on moving his oxygen levels down again.

On the feedings front, he hasn't had any breast milk since he started on the oscillator and will continue to receive his lipids and proteins/vitamins through his IV. They are not expecting this to change until he gets back onto the ventilator. With Reid needing his brain, lungs and heart receiving all of the attention, they don't want to have his gut have to do any work that would take away from his necessary organs. On the doctor's list, the gut/stomach is last on the list. No worries though... he is getting all of the nutrition that he needs right now through his IV -- we just wont see him packing on the pounds right now. :)

Anyway... no news is good news and there really isn't that much to report. He is hanging in there!

Kristen and I headed out to dinner tonight to have some time away from the house, the hospital, and life in general. We had a great dinner and some wine - which helped us relax (very much needed).

We got to the NICU aroun 9:45pm tonight to check on Reid. They have dropped his oxygen levels down from 100% to 96% and he was still sat'ing around 90... which is a very good thing. They introduced a new drug tonight, in addition to the morphine and paralytic called Versed that calms him down (think muscle relaxer). This new drug seems to be helping a little bit. His roommate is no longer in the room and gave the room entirely to Reid - this means the nurse is no longer splitting her time with another baby. In addition, the on call doctor (Dr. Lipsom) is actually sleeping at the NICU tonight just in case Reid has any further issues.

The tiny bit of progress tonight gives us hope, but at the same time, we are not going to get over-excited as we know the difference 5 minutes can make. Crossing our fingers that he can make it through the night without any other issues.

Here are a few pictures for the evening:

The nurses chart which has a cheat sheet of orders given by the doctor. You can see the clear rules of when his oxygen levels can come down, when the oscillator pressure can be changed, how often he is to be suctioned and how often he has his CPT done:


My beautiful wife, Reid (somewhere in there), his nitric oxide machine (left) and his oscillator (right):


Reid with his 15 tubes coming out of the oscillator and into his ET:



Close-up of Reid. They like to keep a blanket over his face (keeps light out and I have a feeling the main reason is to prevent us from seeing his eyes stay open in the event that they do open up). This picture obviously cant show it, but his entire body is vibrating:


Bed time for us. Thanks to all for the prayers and continued support.

Another stressful day in the Elley household.

Kristen and I took a long visit to the NICU today to visit our sick liitle man. When we got there, his sats were in the low to mid 90s but slowly drifted down into the 60s. At that point, which was nearing his 4pm touch time, they suctioned his mouth and throat, did CPT, suctioned him again and then flipped him over to his belly. His numbers started going back up again, but only got to 80 before Kristen and I had enough for the day. Dr. Metcalf was quick to point out that with the oscillator, it takes time for the sats to improve. We are used to seeing quick results with the ventilator, but we have to learn to be patient with this new machine. Reid did get his first dose of his steroids today (which he will now get every six hours for the next three weeks). The doctor is hoping to see a gradual change with the addition of the steroids over the next 24 to 48 hours. It is a waiting game for us right now as there isn't much else the doctors can do at this point.

We are going to get through this but Kristen and I are looking to have some quiet time away from emails and phone calls. As you can imagine, our entire day is absorbed with dealing with the situation and we are just wanting a break from some of it right now.

Despite all of the troubles we have in our hands, I have a lot to be thankful for:

- God. He is the one that is going to get Reid through his battles.

- a very supportive and loving cast of family and friends. All of the calls, text messages and emails (while not always answered or returned) mean the world to us

- a phenonmenal set of doctors and nurses who are treating us like family and Reid like their own child.

-Dr. Metcalf who answers my ten million questions and has the patience of a saint. Putting Reid on his prayer list at his own church speaks volumes of who he is.

- Rachel, our favorite nurse, who gives Kristen big hugs and genuine care for Reid. Her cleanliness and her attention to detail tops my list. Thank God for people who are borderline OCD. :)

- Good red wine to help ease the pain.

- oh, and last but definitely not least, my sexy baby momma (Kristen) who is my rock. :) I love you.

We will be heading back to the hospital tonight; any news will be posted on here. Thanks again for all of the continued love and support.

Just wanted to give a quick update. His saturation is between 88 and 90 while on 100% oxygen. He is trending upwards so they are just holding tight. He is still sedated but has had his diaper changed and there are no issues in that department. His latest blood gas test looked really good. Not going to make the trip in as the NICU closes between 6:30 and 8:00. Will try to get some more sleep but has been a tossing and turning night for us. A very upsetting and emotional night....

What was planned to be an early night to bed for some good rest ended at 10:15pm
with a call from the on-call doctor. Reid's oxygen levels kept falling and were not able to be rescued with 100% oxygen. They were placing Reid on a new breathing device called an high frequency oscillator (HFO). This machine, unlike the ventilator and taking breaths, keeps his lungs fully inflated and vibrates oxygen into the air sacs. Instead of the usual 50-60 breaths per minute, this machine is giving him the equivalent of about 600-900 per minute. In addition to helping with his oxygen saturation, this is also supposed to help blow off some of the carbon dioxide.

When we got to the hospital, Reid laid limp on his bed as they had given him morphine for the agitation/pain and a paralytic to keep him from moving (which they will give him every hour). His stomach looked gorged as the oscillator keeps his lungs full and his body (mostly his chest) was vibrating as the machine pumped the air in and out of him at a very high rate. His oxygen saturation was in the mid-50s (they like these to be in the upper 80s and lower 90s) and his CO2 level was 98 (ideally supposed to be below 50). After what seemed to be an eternity with little to no change on the oscillator, they did an xray only to find out his tube was down too far and was blocking air onto his left lung. A slight movement of the tube bumped his oxygen saturation into the 70s but they were still not happy. They then brought in nitric oxide on a cart and hooked it up to the oscillator. This gas (which is supposedly called the gaseous form of Viagra) helps dilate his veins in his lungs to allow for better oxygen saturation. Within a minute, his monitor was showing good numbers and and a blood test showed oxygen saturation of 87 and a carbon dioxide reading of 38.

He seemed to be fairly stable and the doctors were not planning on doing anything else at the moment and just playing the waiting game to see if he would saturate around the 90s so that they could wean him off the 100% oxygen. And being the fact that it was about 2:00am, Kristen and I headed home to try and get a little bit of sleep. I will call around 5:30am to see if there is any change and might make another trip in depending on the outcome of the call.

I will post more in the morning. Been a long night and not sure we have had a chance to digest all that is going on. I don't think I will be able to tell you how exactly this machine works or what all of the numbers mean... this one is far too complex for me!

Reid had a cranky night last night, so when we went in today, it was nice to have a calm, sleepy boy. His oxygen requirements and his CO2 levels have bounced all over the place butthe doctor told us today that he isn't too concerned. With Reid's scarring on his lungs from the bacterial infection, this is now his norm and will be so until he is able to start growing new lung tissue. Don't think that Kristen and I are going to get too comfortable with the roller coaster ride of emotions we have had over the past week and a half, but we are somehow dealing with it. We get excited with good news and trying to roll with the punches along the way...

So, you ask... what is new in Reid's life? Let me see if I can do a little highlighting:

- His weight was back up to 2 lb 15 oz as of last night.

- He had his first preemie routine eye exam that they usually do around a month after birth. This eye exam is specifically to test for ROP (Retinopathy of Prematurity which occurs in premature babies when abnormal blood vessels and scar tissue grow over the retina. The retina is the light detecting layer of cells at the back of the eye that allows us to see. Abnormal blood vessels and scar tissue can grow over the retina in premature babies with ROP. Reid's blood vessels were still too small, so he will probably have a subsequent test in the following weeks. Nothing to be alarmed about --- just a routine test that they do.

- His feedings are continuing to increase; 18cc tonight and a new maximum of 22cc which will be reached sometime tomorrow. He seems to tollerate the feedings well, and the doctor isn't going put him on the continuous feeds that he was on prior to his PDA medicine. He feels like Reid appreciates having a full belly (as most of us do) and there is no reason right now to prevent him from having these normal feedings. Reflux doesn't seem to be an issue at this point.

- He is going to get a set of "primary care" nurses. The doctors have realized that they need to maintain the same staff for Reid so that everyone is comfortable with knowing what Reid likes or dislikes, what is the "norm", and what to expect. Going forward, he is going to have a small number of nurses that are going to care for him on a daily basis. With each nurse only working 3 days a week (12 hour shifts), I would expect him to have a rotation of 3 nurses during the day shift for the week, and a rotation of 3 for the night shift. With probably 30-40 nurses in the NICU rotation, some days we would get nurses that had not treated him before and were struggling to know what was best for him. Knowing Reid's behaviors, how he likes to be positioned in his isolette, how much light he likes to have, etc. should go a long way. Hopefully a little more normalcy in his routine will help him out.

- Reid is also going to get a new roommate tomorrow. His current roommate is a 26-weeker that came in earlier this week and has his own set of issues. Having two babies with a slew of time-consuming needs in the same room does not fair too well for one nurse. They are going to bring in another baby that is more stable and demands less of the nurses time. This will allow Reid to have more attention.

- Reid tollerated our touching today. Yesterday, he didnt want anything to do with us. Kristen placed her hand on the back of his head (craddling it) and he just laid there content as could be and just starred at us. Kristen likes to think that he was smiling at her, but I seem to think that he was probably just sucking on the tube that is down his mouth. But I can pretend to believe that he was smiling at her for Kristen's sake. :)

No new pictures today. They have turned off most of the lights in his room and with the rainy weather back in town, there isn't much light coming through the windows --- this doesn't do well for picture taking. Hopefully I can snag a few tomorrow???

Not much is new in the life of Reid... this weekend was pretty uneventful. He has remained fairly stable and is starting to finally gain some weight again. Yesterday, he was up to 2 lbs 15oz -- exactly one pound heavier than his birth weight. Today, it has come back down to 2 lbs 13 oz as they gave him Lasix (which helps with his water retention). Nonetheless, he is back up to 13cc of milk every 3 hours and seems to be handling it well.

He got a new roommate over the weekend. This baby was exactly the same size and gestational age as Reid when he was born, so it is amazing to see the difference a month makes. The baby's mother was commenting on how big Reid was... so I guess it is all relative. When you visit him daily, you just don't really see the weight gain... that is, until you compare him to someone who was his exact size.

Kristen and I went to church at the Smyrna First United Methodist Church yesterday. We hadn't been in a long time, so we thought it was time to start going back. We really like the church and we want to eventually get Reid baptized there, so we figured we need to start going more regularly and actually join. The congregation is fairly diverse with a good mix of young and old. We see a fair amount of couples that are much like Kristen and me, so it is comforting.

Kristen was slightly frustrated after we left church though... and made a sarcastic comment... "I don't really like being in public places right now - it is frustrating to see normal pregnant women and normal, healthy babies". We have to keep reminding ourselves that our time will come when Reid his home and he is "normal" and "healthy". Baby steps.

Anyway, sorry for not putting a post up yesterday - the day got away from us as we were enjoying doing some of the normal Sunday chores that we were used to doing (running errands, yard work, etc). We are heading to the hospital now, so I will try and post later.

Are we starting to turn the corner?

There is a little bit of good news today....

- oxygen levels have come down by almost 25 and are hovering around 50.

- his carbon dioxide levels have come down a tad.

- his chest xrays are looking better than they did yesterday. There is a lot less fluid in his right lung.

- his new scale shows 2 lbs 13 oz.

Have we turned a corner? We are hoping so!!!

Reid received his first package from his Claire (his cousin). It was full of goodies that he will enjoy in the months to come. Thank you Lynda, Steve and Claire!!!

Updates for today:

- His PDA is now closed thanks to the medicine that he has been taking over the past few days. The Echo proved to be good!!!

- His feedings are increasing every 8 hours by 1cc (starting from 3cc). By the end of the weekend, he should be back up to 20cc every 3 hours.

- Another bacteria was found when they ran a culture on his mucus. Doctor said that this was a common bacteria that most people would have. Unfortunately, his immune system isnt up to snuff, so he is on another antibiotic for 10 days. They are assuming this is the bacteria that put little Reid over the edge and put him on the ventilator.

- As soon as his bacteria is clear, Reid will be going on steroids (hydrocortisone) for 3 to 4 weeks. He will receive a dose every 6 hours but will be tapering off over the weeks. This drug will do wonders for him (reduce the inflamation of the lungs), but it is fairly powerful. They cannot quit the medicine cold turkey, so they have to wean him off over the weeks.

Overall, he looked much more peaceful today. He hadn't had morphine sice 4am today and we saw him around noon and was sound asleep. He did peek his eyes open for a brief second but then fell back asleep. Time for me to run... our friends Alison and Amit are coming over for dinner tonight. Let's see if Kristen "relaxes" again and has a few too many glasses of wine. :) I will leave you with a few more pictures for the day. Hope everyone has a good weekend.

Happy One-Month Birthday Reid!

Stable is good

Today was a very quiet day for Reid. Kristen took the day off from the hospital as she was feeling pretty tired today - both emotionally and physically. Emotionally for obvious reasons; physically from a tad bit too much wine last night. :) It is very draining to go to the hospital and see Reid - you don't know what you are going to walk into when you go, you feel helpless while there, and hate to leave him when it is time to go.

I took off around 3:30 today and ran a few errands before heading to the NICU. Got to the hospital around 4:30 and stayed for about 30-45 minutes. When I got there, it was one of the Reid's "touch times", so he was getting flipped over from his stomach to his back. He absolutely loves to be on his tummy but the nurse hadn't flipped him all day, so it was time for him to be on his back. Reid doesn't like to be moved like this, and unfortunately, he gets really upset (as seen by him turning purple, having a pouting look on his face) but he cannot cry vocally. The tube that is down his throat prevents the vocal cords from vibrating, so it is rather depressing to see him so upset and not a single peep come out of his mouth. Within minutes of him being flipped over, he is usually back to normal. The nurses say that he is agitated most of the time, but the doctor has ordered morphine to keep him calm (and most likely asleep). Today, however, he decided to wake up for almost my entire visit. I think he was more interested in the tubes that were close to his face than looking at me, but at least he had his eyes open. :)

The "official" report of his Echo had not come back yet, however, the nurse was present when the technician came in to do the test. The tech is not the person who gives the official word, but from the looks of it, it appears his PDA has closed. We should have the official word tomorrow --- but we are in desperate need of some good news, so we are praying.

His oxygen levels were up a little from yesterday but his carbon dioxide levels are remaining near normal. His blood counts were also good.

As Reid gets older, the nurse said that he will less likely have blood transfusions. Being that he is gestationally 30 weeks old this week, his bone marrow is starting to develop/mature and can start producing his own blood. Giving transfusions can make his marrow think that it is doing a good job and in turn, lessen the amount of blood that it produces. It is a false positive for the marrow and because of this, the doctors will allow for his hematocrit levels to drop a little farther than normal before they would think about another transfusion. They want Reid's body to mature and produce his own blood.

Reid starting eating again today. As you will see in one of the pictures, I was able to feed him his 3cc of milk. He will be getting this every 3 hours until tomorrow, at which point, the doctors will re-evaluate how he is handling the food after not eating for a couple of days. Most likely, they will gradually increase his milk intake to where it was before he went on the PDA medicine and he can then start putting on the weight again. Today, he weighed 2 lbs 8oz (a loss of 2oz over the past 3 or 4 days).

The labs went out yesterday or the day before for his lung infection. Until the doctor gets a reading on these labs, he will not administer the steroids for his lungs. The steroids will depress his immune system and they refuse to give him the drugs until he is bacteria free. I expect we have at least a week before we hear anything on this front. I am axious for him to get the steroids as this should help his lungs grow fast and also get him that much closer to being off the ventilator.

My mom is in town this week, so she is heading over to the house tomorrow morning and we will make a trip to the hospital so that she can visit him.

On the job front, today was my last day on my AT&T project. Not sure if I will be completely removed from my email and I am sure that I will be wrapping up a few things over the next few days. But now, it is time for me to decompress and allow my mind to go numb to the things outside of the family. I do want to get a few things done around the house next week and this will afford me the time to do it. Pressure washing and staining the fence is next on the list... my luck, it will start raining next week. For my next work gig, looks like the project at WellPoint may still be a go. I will be talking to the manager tomorrow and will most likely be starting sometime the week of the 19th.

Well, it is bedtime for me. Hope you enjoyed some of the pictures today. In the last image, you will see that I laid out a measuring tape -- many of you are curious as to how big he really is -- so this should answer your questions -- he is tiny. More tomorrow...