2:00pm: Reid's CO2 this morning was 59! He handled the wean well. Looks like we will be in a holding pattern for a few days (number unknown) before they attempt a wean to 2 liter.

9:45am: It was Friday. I blinked. And now it is Monday. Where did the weekend go? Seems like there is so much to do and with the little time that we aren't at the hospital, it isn't nearly enough time to get it all done. We did, however, manage to sneak in a a few hours of fun yard work yesterday. I got the lawn mowed and Kristen planted some flowers in the front of the house and we got her herb garden going out back that she has been talking about for quite some time. So, maybe the day when we actually have time to cook dinner, we can use some of our own herbs. :)

For Reid, Saturday was a day full of being alert, smiles and TV watching. Yesterday, he needed some time to recover from his 'hangover'. Before we got to the hospital, he was a very cranky baby and a couple of nurses ended up having to hold him for hours on end. The second they would put him back down in the bed, he would lose it. The concerning thing was that they had lowered him to 3 liter flow yesterday morning and didn't know if his crankiness was a part of the weaning process. And of course when he gets upset, his work of breathing becomes a little more obvious.

When we got to the hospital, he was on 3 liter and 100% oxygen. The plan wasn't to put him on 100% oxygen so we were a little confused when we saw that. I guess between him getting so upset and so pooped out from Saturday, he actually needed the 100%. And to top it off, he had been over 24 hrs without a bowel movement and with his gas pains, he was working hard on something. :) During our entire visit yesterday, he was awake maybe 30 minutes. The remainder of the time, he was sound asleep. Kristen and I left around 8:15 last night and were a little nervous about how the night was going to play out as he had slept most of the afternoon. We weren't sure if he was going to have a rough night of tossing, turning and crying...

When Kristen called around 6:30 this morning, he had slept the majority of the night. He had only woken up twice. Once with a poopy diaper and once with a lost pacifier. Other than that, a pretty calm night. His O2 was back down to 75%.

Reid is having some lab work again this morning - for his cortisol levels and for his CO2 gas. We are on the edge of our seat this morning waiting for the CO2 reading as this will be the true test to see if he is handling his 3 liter flow. Crossing fingers...

10:45am: [Kristen's entry] Reid had a quiet day yesterday. I arrived around 2:00 pm and he was sound asleep. The nurse told me that he had been sleeping since noon and he proceeded to sleep until 4:00! After he woke up we played for a bit and then he fell asleep again in Chad's arms and had a great 45 min-1 hr nap. At one point while he was awake Dr. Hamrick stopped by to chat with us and Reid would not take his eyes off of her. It's like he knew exactly who she was and that we were all talking about him :) So, the plan is to power wean. Dr. H feels like we are at a point now that we need to see what Reid can handle and while she doesn't want to give him less oxygen or pressure than he needs, she does want to push him a bit. Today or tomorrow Reid will likely be weaned to 3 liters and if he tolerates that well and does not have an increased work of breathing then he will go to 2 liters sometime this week. Everyone involved in Reid's care agrees that it's time to get him home. Should he not handle the weaning then the trache option will be talked about again but I don't even want to think about that. I think he will do just fine on the cannulas and Dr. H and the nurses agree.

Chad and I bathed Reid last night (this is our 3rd night in a row of doing this!) and he did so well. It's definitely a two person job since one person is the bather and the other is the entertainer :) Reid has a new rattle from the physical therapist and he loves it. He can't hold it on his own yet and when he does try he immediately hits himself in the face with it (poor baby!), but he LOVES to watch us shake it in front of his face. During the entire bath + g tube care I just shook that rattle and Reid was mesmerized. I even got a few smiles from him.

After bath time Reid was ready for bed and the night nurse said that Chad and I hadn't even left the NICU before Reid was already sound asleep. I guess he had a rough 30 minute period a couple of hours after we left but both the nurse and the respiratory therapist were able to console him w/o having to give him chloral hydrate (yay!!!!). He slept through the whole night and did not have to have his O2 adjusted at all. He held his sat's steady the whole time he was asleep. This is awesome!

Chad surprised me with dinner reservations at one of our new favorite restaurants so we enjoyed our alone time together last night. Our 9:30 reservations may seem a bit late but it worked perfectly with our schedule. We were able to spend the whole day with Reid, bathe him and put him to bed and then go out and relax. Today is our day of errands and playing catch up--our refrigerator is empty except for some milk and condiments so the grocery store is definitely in our near future. Thank heavens our friend Alison will be cooking us dinner tonight!!

Chad and I will be checking out a possible pediatrician this week whose office is about 3 miles away from where we live. She comes highly recommended from another NICU family we have met and who live in our area. We will also take CPR classes this week. Fun times.

And finally an update on baby Joseph: He is doing great! I saw him yesterday chillin in his baby swing and he looked so content. I know his parents have greatly appreciated all of your thoughts and prayers. Thank you!

1:15pm: Reid's oxygen is hovering in the 60-70% range so it seems to be marginally getting better. They are going to attempt to wean to 3 liter tomorrow if his O2 stays fairly steady today.

The big news of today is that they put a TV in Reid's room. They feel that he is old enough and is getting bored when the nurse is out of the room, so they want him to keep occupied when he is alone. This morning, he had fun watching the Wiggles and Baby Einstein.

7:45am: Finally - a quiet, good night for Mr. Reid. He slept the majority of the night and appears to be a happy camper. His O2 is still on the high side though. I am looking forward to seeing him today as I didn't get to visit with him yesterday. TGIF.

11:30pm: When Kristen called into the NICU this morning, our nurse mentioned that Reid seemed to be a little more like himself today - not as fussy and maybe a few more smiles than normal. Kristen, after going to work this afternoon, made it into the hospital where she found him on 4 liter flow (~70% O2)! They decided to put him back down to where he was last week to see how he would do. And after she held him for a little bit, he ended up coughing so much that it wore him out. The respiratory therapist and doctor came into listen to him, and after a very stressful time, they decided to start giving Reid his diuretic every day. He was getting it every other day, but his lungs seemed to sound "wet". Shortly after getting the dose, he had a 165cc wet diaper (normal are around 60-70cc) and his lungs started to sound normal again. He is retaining too many fluids, so they are going to keep him on a daily lasix dose for a little while to see how he reacts. Giving a diuretic daily causes depletion of many electrolytes and they will need to keep a close eye on his levels (they currently give potassium chloride to compensate for some of this already).

I stayed home today as I was slammed at work, but welcomed home a very stressed Kristen around 9:30 tonight. She had never seen him cough like this before - enough to make him have no energy and practically fall asleep. We had a few glasses of wine tonight to calm her nerves which seemed to put her in a better mood, but was glad that Reid sounded better and was able to get some sleep.

I am hoping to have a light schedule tomorrow for work and will be going into the hospital and let Kristen get some of her work done at home. The past few days have seemed to get better and better and we are hoping for a better day tomorrow than we did today.

11:15am: Reid didn't sleep well again last night - he would sleep for an hour or two and wake up crying. The nurses have asked us repeatedly when we are coming in, but since it is Wednesday, both Kristen and I are hunkered down with work and won't be able to make it in until later today (after 5).

His CO2 this morning was 49 so they ended up weaning him to 5 liter flow! His oxygen continues to hover around the 60-65% mark.

He has had two very runny bowel movements already today. This could be another sign of teething, but at this point, we aren't even close to assuming that it could be this. Just grasping for something!

10:45pm: Reid had a very busy day today and the poor little man was beat! His IV appeared to be hurting him, he had been stuck for his lab work this morning and he was not a happy camper. As soon as his blood transfusion was complete, Kristen and I quickly asked if the IV could be removed out of his foot. They typically don't like pulling them if they don't need to - but in this case, since Reid didn't really have a need for the IV anymore and with the thought that it was hurting him, they went ahead and pulled it.

He was on such edge tonight that we didn't even give him a proper bath. We wiped him down with baby wipes, cleaned his g-tube site (which is not looking pretty these days), got him weighed, dressed him --- and all of this was done with him being half asleep. We had given him some chloral hydrate tonight to help calm him down, and he was OUT!

Tonight, he weighed 6.88 kg or 15.17 lbs.

We hope he has a good night's sleep tonight and is well rested for tomorrow. We maybe got one or two smiles out of him tonight and was mostly a stressful visit, so we will be ready for normal Reid tomorrow (if its possible).



3:10pm: Reid's IV stick went well and they were able to get a suitable vein on the second attempt. Knowing in the past that this has taken upwards of 9 or 10 times, this is a nice sigh of relief for mom and dad! They also took another CO2 and it was 50.6! The blood just arrived to his room and he will be getting 100cc over a 4 hr period. O2 is still at 60%.

12:00pm: I commented to Kristen last night about how the drive to the hospital every day puts me in such a bad mood. So today while I was thinking about it, I ran a few calculation for some interesting statistics. To date, this journey through the the NICU has lasted 231 days and can be converted into the following units:

• 19,958,400 seconds
• 332,640 minutes
• 5544 hours
• 231 days
• 33 weeks
• 7.63 months

Driving back and forth between the hospital and home has put on about 8,000 miles to our cars. Driving that many miles has also consumed a good part of our lives; in fact, it can be equated to roughly:

• 15,720 minutes
• 262 hours
• 10.9 days

So, who ever said that parenting was a full-time job... they were 100% correct!

11:15am: Just got a call from health care company that will be providing the at-home nursing for Reid when he comes home. The process has started and we need to sign the paperwork they are faxing to the hospital today. As each day goes by, even with a minor set back this past week, we are getting closer and closer to him coming home.

No more than two minutes after the call from the health care company, the hospital called to tell us that Reid will be getting another blood transfusion as his hematocrit levels have been slowly dropping since his surgery. I don't know if this is due to them drawing blood all the time for his CO2 tests and recent Cortisol labs, but he has gone from 38.1 pre-surgery to 35 and down to 31.6 today. That number represents the percentage of blood volume that is occupied by red blood cells (males should have a level between 39 and 50). And going back to your biology classes in school, red blood cells are the mechanism as to how the body delivers oxygen to the tissues. So, in this case, the more red blood cell Reid has, the easier it is for him to oxygenate. We hate seeing Reid with IVs, but if it helps him out, we just have to deal with it...

Also, over the past few days, they have been running some cortisol tests to see how they can wean Reid's hydrocortisone dose. After the tests, it appears that Reid's body isn't producing enough of it on his own yet, so they are actually going to make a slight increase. Instead of getting the .25mL every 12 hours, they are going to go back to every 8 hours.

I didn't get a chance to blog last night, but Kristen and I had a good visit with him yesterday. He seemed to be in a much better mood than he has been over the past several and didn't cry a single time we were there (which he seemed to have been doing at the drop of a hat previously). We even gave him his bath without a single peep out of him - he seemed to enjoy it and was all smiles.

His Oxygen has come down a bit further today to 60%, but would imagine with the IV they are giving him this morning that it will go up again. Nonetheless, he is still making some progress as compared to the past 5 days.

5:25pm: The reading on the ECHO came back and there was nothing notable worth mentioning. From what we understand, his pulmonary hypertension has been ruled out as a culprit for his elevated oxygen requirements over the past few days. Good news.

11:15am: Reid already had his ECHO this morning and we don't know the results as of yet. The nurse did mention that it seemed to be a fairly routine procedure and it was not discussed in rounds. So, I guess the waiting game begins...

His CO2 this morning was 67.4, so it has come down a little bit as well. Doctors are still comfortable keeping Reid on 6 liter flow if he can manage to keep his O2 requirement steady. Still on 65%.

8:45am: Reid's O2 is down to 65% this morning - so it is a little sigh of relief to have made a change in the right direction. Last night, they started giving nebulizer treatments instead of his measured dose inhaler puffs. The nebulizer fits in line with his tubes that run to his nose so this should cause him less stress as he probably won't even know he is getting it. The inhaler's were a little stressful as they used a AeroChamber device/mask to administer and little Reid doesn't care too much for this to be over his face.

The new drug they are using in the nebulizer has a side effect of a high heart rate. I don't think it is anything too alarming, but will take him a little bit of time to get adjusted to. This morning while he was asleep, his heart rate was about 180. His normal sleep is about 140 and a deep sleep is about 120.

Not much else to report this morning. We are hoping that he continues to head in the right direction and will visit him later on this evening.

11:00pm: Still nothing growing on the lab work - so I think they are going to write off the fact that there could have be an infection. They have ordered an echocardiogram for tomorrow (Monday) to see if there has been a change in his pulmonary hypertension - as this could have an effect on his oxygen saturations as well. This makes me a little nervous as he is already on the maximum dose of sildenafil. Kristen and I are grasping to find a reason for his elevated requirements - maybe this is something is related to teething? I stuck my finger in his mouth to feel around on his gums and didn't feel anything - but I also didn't know what I was really feeling for. He actually enjoyed this and he chomped on my pinky for a few minutes - never sucked on it, just gummed away...

Otherwise, it was a pretty uneventful day. He was, for the most part, in a pretty good mood. Tonight, he weighed 6.67 kg or 14.7 lbs.




12:15am: labs are still showing negative for infection and we are almost past the time window where if something was going to grow, we would have probably already seen it. So, that is the good news. The bad news is that no one can seem to put their finger on what is going on. He is still on 6 liter flow and about 75% O2. My parents visited him this morning and Reid ended up having a "blow out" while my mom was holding him. It managed to get his clothes, half way up his chest and back and stunk to high heavens. And that single event triggered him to cry like I have never heard him cry before. And it was a rather chaotic visit until about three o'clock when he woke up after finally calming down. And when he woke up, he seemed to be back to his normal self and seemed to be in a fairly good mood. And about two minutes later, Kristen and her folks arrived and was able to enjoy the smiles and cooing. I guess I took one for the team and was stressed out for a good three hours dealing with a baby that was out of control. Felt like I needed a beer after I finally handed him over to Kristen.

He didn't sleep well last night, so I think that he was extremely tired and needed some rest. In fact, when the nurse gave him a bath tonight, he fell asleep during the middle of it. And when the nurse was trying to dress him, he could barely keep an eye open to see what was going on. Hopefully tonight he can get a good, deep sleep and have a more even keeled day tomorrow. Personally, I would like to enjoy holding Reid when he is in a good mood. :)

We are a little frustrated right now with the uncertainty as to what is going on. His temperature is fine, he isn't acting sick, and for the most part, he seems to be his normal self - just with high oxygen requirements. We are crossing our fingers that we can put a finger on what is going on. Please keep him in your prayers - they seem to have worked in the past. :)

3:15pm: Still no word on the labs but we did find out that Reid weighed 6.73 kg (14.84 lbs) the other night and when they weighed him last night, he was 6.54 kg (14.42 lbs). I am wondering if he had gained too much weight too fast which ended up taking a toll on his breathing? When Reid grows, he needs lean growth and not just pudge. We are still on pins and needles waiting to hear something... and at the same time, we are hoping we hear nothing.



11:45pm: Doctors rounded and have decided to do an extensive set of labs to check for infections and elevated levels. No time frame known as to when we will hear results...

8:45am: I wish I had better news to report, but Reid has had a little set back and was bumped up to 6 liter flow at 80% oxygen. They have taken an xray and everything looks fine. He is acting normal, but seems to be breathing a little more shallow than normal. We are anxiously waiting for the doctors to round. Guess we won't get our hopes up that he is coming home anytime soon...

9:45pm: Not much to report tonight. Kristen and her mom spent all afternoon with Reid today while I held down the fort as we had a new air conditioner and a new water heater installed in the house. Talk about fun expenses, but guess we are trying to get the last little things done before Reid comes home.

Reid didn't end up having his lab work this morning as they mistakenly gave Reid his hydrocortisone dose before they came to draw the blood. They will come again tomorrow morning and they will also be doing a blood gas test for his CO2. We are anxious about both.

Grandpa Hart will be in town tomorrow evening and my parents are in town this week as well. So, Reid will have a visit from 4 grandparents -- all within a couple of days. Lucky boy!

5:30pm: You think that Reid likes his Grandma Hart reading a story to him or what?

10:00pm: Reid has figured it out. If he cries, someone picks him up and is consolable. Put him down and the fun begins all over again. Like yesterday, he had a very fussy start to the day so I made my way into the hospital around 1 today. I spent the majority of the day there and fought through several crying fits. I have found that if a scrunch down really low in the non-reclinable chairs, that I can rest him on my chest for some "tummy-time". This allows him to pick up his head, move it around and push off against me. When I had him like this today, I patted him on his back and he was fast asleep... that is until I stop patting him. Then he starts this little whimper as if he is telling me, "don't stop dad". So I start again and he falls back asleep... I stop patting, and out comes the whimper all over again.

I asked the nurse today if it would be OK if I bought him a "grown-up" pacifier and she thought it would be OK. They actually had some in the NICU, so she went and got it for Reid. The nipple is shaped a little different and I thought it would help him keep it is his mouth a little easier. It gets a little tiring to sit there and hold his wabbanub pacifier in his mouth -- I think it is a little too bottom heavy and easily falls out of his mouth. This new pacifier did its trick and he managed to sit there and suck without any help. I am hoping that this will give us a break because it seems like when he is fussy and his pacifier falls out of his mouth, all hell breaks loose.

His CO2 this morning was 58 - which is better than it has been in a couple of weeks. The respiratory therapists say they still hear a little 'wetness' in his lungs and the doctors have squashed the trips to the garden until the pollen outside subsides. They aren't sure if the pollen was what got to him the other day, but they don't want to chance it if they don't have to. Instead, his trips in the stroller will all be indoors. Tomorrow morning, he gets a visit from the phlebotomy team as they will be pulling some blood for his cortisol level test. They are doing this to see what Reid's body is producing as they are planning on weaning the hydrocrotisone. His bowel movements seem much easier now that they are not fortifying his milk. Over the past few weeks, it seems that he has had to have glycerin suppositories more often than not, but he was able to churn out too good diapers for me today. He always saves them for me. :)

11:30pm: Reid had a very fussy start to his day and has a hard time getting under control. However, when Kristen and I were there today and he starts to lose it, we don't seem to have an overly hard time getting him to calm down. Not to say that he never acts up, but I think that he realizes who we are and is more receptive to us more so than the nurses. In fact, the nurse tonight even mentioned this.

His CO2 was still high last night: 68. The only change they made during rounds was to modify the fortification of the milk. We had gone from 26 calorie, down to 24, down to 22 and landed at 20 calorie today --- which is actually no fortification at all. This should be easier for Reid to digest and the extra calories are not needed anymore; he obviously has no problem putting on weight. This is great news for Kristen and I as we will not have to "prepare" his feeds when he comes home. Even though it it is as simple as mixing a small packet of powder into the milk, it is just one more step that we would have to worry about. Anything to make our lives easier is good in my book!

The nurse tonight made a comment that she thought that Reid was developmentally different this week than he was last week. He treats people differently, handles situations differently, has a curious eye for everything that is going on in the room, and tonight, has been batting at his mobile hovering above him. We have seen a little of this, but tonight, he was pulling down on the mobile. He should have probably been doing this about 3 or 4 weeks ago, but hey, progress is progress and we will take it. We know he is going to be slower to do things than the rest of the kids, but that isn't anything to worry about - he will get there.

I think the doctor's hopes to have him home in 3-4 weeks as of last week were overly optimistic. Without him being weaned to 3 liter on Monday, I think we have seen that it would be nearly impossible to get him home by the first part of May. I think it is probably safer to double that number, but we aren't letting that discourage us. We have our "game faces on" and focusing on learning all the little tiny things that will better our experience when he comes home. For example, since we are not allowed to draw up the medicines in the hospital, we will be practicing with water and the multiple syringe sizes. When it comes time for medicines (about every 3 hrs), we will look on the chart, see what he needs to have, pull the water into the syringe with the exact measurements and then have the nurses validate what we have done. Administering the drugs is the easy part - which we have done numerous times... it is the determination of which drugs need to be given and how much which is going to be the more time consuming and tedious task. we have great teachers in the NICU and are glad that they are being proactive with us.

Oh.. I put his latest measurement numbers (as of Sunday) into his growth chart. His head circumfrance and weight are slowly creeping up into higher percentiles, but his length is staying true to his growth curve. However, if he follows with the Elley bloodline, he shouldn't have a problem with his height. :)



Anyway, that is it for the night.... bed time for me.

2:30pm: They had to go up to 5 liter flow last night as Reid continued to de-sat while he was asleep. They have listened to his lungs and apparently he sounds very wet and retaining too many fluids. They gave him a supplemental dose of his diuretic to see if this helps, but he had a very high CO2 of 72 last night. He is back down to 4 liter today, but looks like we might be in a holding pattern for the next day or so to see if this evens out. The large weight gain (almost a half a pound in a couple of days) would also be attributed to the retaining of fluids. It is a little frustrating as we had our hopes up that today would be the day he went to 3 liter. I guess we need to put back on our NICU hats and never get overly excited or too upset about things --- it is always a roller coaster ride in the NICU, regardless of how close you are to going home.

10:45pm: A fairly quiet and uneventful day for the Elley's. I made it to the NICU around 11:30 this morning and met up with our friend Alison who was paying Reid a little visit. Kristen came about 1pm and brought lunch and then we went outside for an afternoon stroll around the hospital gardens. We stayed outside for about an hour and Reid did quite well - he didn't cry when we put him in his stroller or even on the way out of his room (like he sometime does). Maybe he is getting used to it, or maybe it was just a good day?!? The weather was beautiful - low 70s and clear blue skies. He managed to stay awake for a good bit before he decided to crash like he typically does when he is in the stroller.

Kristen and I (more Kristen than me) are taking over which seems to be more and more responsibility in the hospital. Breathing treatments, feedings, medicine, etc. I think we are fairly comfortable with what we are doing, but know it will be much more interesting when he comes home. We will be the ones that are measuring out the medicine, knowing which medicines we need to mix with milk, fortifying the milk, etc.

We are supposed to find out a little more this week with some recommendations for Reid's pediatrician. We have talked to a few people and seems like there is a group that is no more than 2 miles down the road that has a great reputation and sees quite a few premature kids. We will also need to scope out a few pharmacies that are capable of compounding some of Reid's medications. I don't think it will be hard to find some that do it, just that we need to find a few in our area that we can rely on. He has two medicines that need compounding - one of them being the Viagra -- somehow I feel it is going to be a little hard for him to swallow that little blue pill. :) Instead, they crush it up with a mortar & pestle and then mix it into a liquid that will be given via g-tube. The other medicine is Prevacid. Not sure if I mentioned the other day, but Reid will be coming home with about 14 medicines.

Tomorrow is supposed to be the big day for the weaning of his flow. He will be moved to 3 liter flow at 100% oxygen assuming that his night goes well. We aren't overly concerned with him being able to handle it as this is what he goes on when we take him outside to the garden, but this is usually for short periods. The big thing to look for after they make the wean is his CO2 gasses... Time will tell, I guess.

Reid handled his treatments and bath well tonight and fell fast asleep. He usually has a cranky evening, so we are off to a good start. He was weighed and came in at an even 6.5kg or 14.33 lbs.

Anyway, time to sign off and get ready for another week of work. Please continue your prayers for baby Joesph as he underwent a rather large bowel surgery today after some of the side effects of the infection took their toll.

12:45am: [Kristen's blog] We would like to ask all of our blog followers to please pray for baby Joseph Martin. I have recently befriended his parents at Egleston and I know they would appreciate any and all prayers at this point. Joseph and his twin brother were born in October at 24 weeks gestational age. His twin passed away and Joseph, who was supposed to be going home this Monday has recently had some setbacks (NEC) and is now fighting for his life. I can’t imagine losing one baby, let alone two, so while we are so grateful for Reid’s continued improvements and can’t wait to have him home, we are reminded of the struggles that our fellow NICU families face. Please pray that baby Joseph’s bowels do no perforate and that the antibiotics do their job!! And also for all of the doctors, nurses, respiratory therapists and everyone else involved in his care—that they make the best decisions and use all of their knowledge to give Joseph the best care possible.

On a little lighter note, I spent the afternoon with Reid and while we were not able to go outside we had a fun time reading stories, talking and singing. His CO2 was 47 this morning but his O2 is around 60-65%. He was in a good mood the whole day and even laughed through one of his aerosol treatments. I have learned how to give these treatments and administer his medicines. I am so proud of myself! I also know how to change out the feeding tube and I gave Reid a bath Thursday evening all by myself. Bathing him is not exactly an easy task as he normally cries throughout the whole ordeal and we are more focused on his breathing and oxygen saturations rather than making sure he is getting clean. Too much crying leads to increased work of breathing which can lead to low O2 saturations which leads to a very nervous mommy and daddy. He does not like his baths at all so we are hoping once he comes home he will learn to like them and maybe even enjoy them.

I hope everyone is having a great weekend. We enjoyed a very yummy dinner of lobster tails and dry aged steaks. Thank you Hamer family! We are 100% stuffed!!

6:30pm: Kristen got the most unexpected news today when she got to the hospital - the doctors are planning for Reid to come home in the next three to four weeks. My reaction: heck yes! My second reaction: oh crap - are we ready?!? Kristen and I have been mentally preparing for him to be home in June and realized that there was quite a bit of changes that we had expected to see in Reid before it would even become close to reality. Namely, the weaning of the hydrocortisone, methadone and most importantly, his oxygen. Today, they weaned his hydrocortisone and Monday they are preparing to wean on his flow. And subsequently, they have been trying to figure out what alternative drug they want to put Reid on instead of the methadone. Knowing that it is a controlled substance/narcotic, they want to find a drug that they can use that will be easier for us to get access to at our local pharmacy. On Monday when they wean the flow, Reid will be put on 100% oxygen and they are hoping to have him down to 1 liter in the next few weeks.

We have a case worker that has been working with our insurance for home health care and medical equipment. We know that at a minimum, we will have oxygen tanks at home, but we aren't sure what sort of medical care we will have. It initially could be 12 to 16 hrs of nursing care at home and dwindled down as Reid progresses. It will be interesting to have someone essentially living in our house for awhile, but we will need the help. I guess over the next few weeks we will find out what our doctors will recommend and what our insurance allows for.

Another big topic of consideration will be determining who Reid's pediatrician will be. There has been talk of us being assigned to the Emory clinic as our primary care physician so that we will have access to very tallented doctors and specialist (namely pulmonologists). It would be a drive for us for his visits - no more than what we are doing daily now - but it would be best for Reid and that is all we care about.

Life is going to take a new turn - probably more challenging than we have ever faced in our lives, but we are willing, able and ready for our little man to be home. From what we have heard, kids like Reid thrive when they get home.

I didn't get a chance to blog yesterday, but there wasnt much to report. He still faces his daily challenges of sweating, pooping and itritability, but we are hoping that these things will go away when the steroids and methadone are out of his system. Unfortunately, they went back up on his methadone dose yesterday. His ativan was weaned on Tuesday and his feeds were increased today to 105cc every three hours over a 20 to 30 minute duration.

I am sitting at National airport in DC and just learned that my flight is delayed a little over an hour due to bad weather in the Atlanta area. Ugh. I am ready to be home and see Kristen.

9:30pm: Kristen had a nice long visit with Reid today and was able to be involved with a lot of his medical care. She was able to administer all of his medicines and change out the feeding tube that connects to his "button". Their goal is for us to get used to doing as much as possible knowing that we will be doing these things when we get home. If we are comfortable doing them in the hospital, we will most likely think nothing of it when we get home.

Speech therapy came by today to do an assessment and wanted to see if he had any oral aversions. They put a spoon is his mouth to see how he would react and he actually behaved how they expected him to. He moved it from side to side and "explored it". The next test was to see how many sucks he could have on a pacifier in a single sucking bursts. Normal babies get around 30 sucks, but Reid could only get about 7. Since it takes so much for him to breath in general, you can only imagine what it takes for him to breath and coordinate sucking at the same time. The last test was for the therapist to put some milk on her gloved finger and put it in his mouth. She moved it around, and while he tolerated it for a moment, as soon as she touched the roof of his mouth, he started to gag. It is obviously going to take some getting used to for him to have something other than his pacifier in his mouth, but they are hopeful that they can start some solid feeds within the next couple of weeks.

It gets a little frustrating when you think about how he compares to a full-term baby, but we are trying to focus on what matters... and that is that he is learning new things almost daily. Even an uneventful day in the NICU is a good day, and we are grateful that he is on the right track.

I will leave you with a few pictures that I have on my computer from the past few days (unfortunately, I dont have any Easter pictures with me).






5:30am: An early morning for me as I am heading off to DC for the week... well, until Thursday night anyway. I wanted to get something out here before I headed to the airport as it would probably be tonight before I will have another chance to get on here. Reid has been doing OK --- he had a rough time on Sunday evening and night and just seemed to cry and cry. When the nurse would pick him up, he could be consoled, but as soon as she would put him back down, he would start crying all over again. During the night when he was sleeping, he started de-satting and his O2 had to be turned up to 85. This is unusual due to the fact that he was sleeping, but probably shows that he had used up all of his "reserves" when he was crying for so long. A lot of activity and crying can wear him out. Yesterday, he seemed to be back close to normal and his O2 requirements had come down. He was still a little fussy, but not too bad. Physical Therapy was a little bit of chaos and when Kristen gave him a bath last night and he had nothing to do with it - but other than that, he seemed to have a pretty regular day full of smiles. His last weight (Sunday night) was 6.255 kg or 13.79 lbs. We are getting close to having a 14 pound baby!

Well, I need to run. Hopefully I will have more time tonight to get some pictures up here. Time is precious these days and we just don't seem to have much of it.

9:00am: Happy Easter! It is another beautiful day in Atlanta today. Clear blue skies, warm weather and pollen. Yesterday officially kicked off the allergy season for me and I am officially miserable. Probably doesn't help walking Reid in the hospital garden that is full of flowering trees and blooming flowers... but it is worth every minute to get him outside (which we did again yesterday).

Kristen and I are not with our families today, which makes this holiday feel a little odd, but being away from Reid today isn't even fathomable. We will make it to the hospital early afternoon, dress him up in his Easter outfit and hopefully take him outside again. Should be a pretty quiet afternoon...

No big news on our end - Reid is still hanging in well with his 4 liter flow; his feeds are still going well and his weight keeps increasing. Last night, he weighed 6.205kg or 13.68 lbs. I was able to see a chest xray of Reid's yesterday from March 25th. While his lungs still look less than stellar, I could see that his lungs were headed in the right direction. Previously, we could see two very large cysts (one on each side) and a lot of haze (which is scar tissue). Yesterday, I was unable to distinguish the cysts and the haze seemed to be a diminishing percent of his overall lung tissue. He still has a long way to go, but it was nice to see some improvement since the last xray that I saw over a month ago. The more good days he has, the better his lungs will look.

We hope everyone has a very happy Easter and is able to spend time with their families today. Thank you again for your continued prayer and support over the past 7 months. Today is a day we can reflect on the presence of God in our lives and thank Him for the blessings he has given Reid and our family. Without him answering our prayers, we would not be where we are today.

11:00pm: Reid has well passed the 24 hr mark on the 4 liter flow and seems to be handling it well. We know it is going to get harder and hard for these weans to happen and be successful, but we are hopeful he keeps hanging in there.

We were able to take him outside today -- this time, it was a little different than normal -- no nurses, no respiratory therapists, no doctors. Just Reid, Kristen and myself. Freedom! The nurse was a little busy today and knew that we wanted to go outside and the doctors allowed us to go outside all by ourselves. The doctors did, however, make sure that we had their cell phone numbers and gave us a quick overview of what to do if anything bad was to happen, but Kristen and I knew that we had everything under control. The things we have witnessed over the past seven months have prepared us. And, yes, 7 months --- Reid was born 7 months ago today. Hard to believe.

His feedings are no no longer given to him by pump, rather the milk is added to a container and then fed by gravity into his g-tube. Overall, it takes about 15-20 minutes and we are more than pleased at how well he has handled the rapid change in his feedings.

He was weighed again tonight and is 6.17 kg or 13.63 lbs. His blood gas (CO2) tests are now going to be done every other day. He did not have a test this morning, but will have one tomorrow. Guess this is another sign of stability and gives his heel a break from being pricked so often.

10:30pm: We are hoping that three time's a charm as they decided to lower Reid's flow to 4 liter this morning during rounds. So far, he has held steady and seems to be tolerating it. He has also handled his feeds well (100cc compressed to 30 minutes) and has had a pretty good day. Kristen and I were able to take him outside around 6 tonight for a walk in the garden. He seemed to enjoy it and stayed awake for a good 15-20 minutes until he passed out on us - he really likes the movement of the stroller.

Doctors have changed their mind about the weaning of the flow. Last week, they had talked about pushing him to 100% oxygen and seeing how well he would do. Now, they want him to get to 2 liter flow before they do that... so we will go the conventional route. Not sure if it really makes a difference for us, but we were anxious to see how he would handle it --- we will just need to wait a little while longer. The only other change today was the increase in his diuretic, as it was adjusted for his weight gain.

11:15am: Reid crashed last night after his long day yesterday and got some good, uninterrupted sleep. His CO2 was 62 and his excess base had come down to +8 (still on the high side, but better than yesterday). Over the night, they were able to successfully get him down to the 30 minute compressed feeds without any issues. I imagine they will let him get used to this and hopefully starting next week they will start the flow weaning process.

It is another beautiful day here in Atlanta and Kristen is hoping to get Reid outside when she gets to the hospital around 2.