September 2006

September 30, 2006 (morning)
Ashleigh slept all Thursday night and through about 1 pm yesterday. She was up I think once in the early morning for a little while. That's a lot of sleep. We went ahead and changed her trach change shortly after she woke up to try to catch her in a good mood. She began showing small signs of distress a little while after that. We started looking for issues with her trach, issues with the way it was tied on, etc., thinking maybe something was not right.

Her nurse practictioner came in and started listening to her chest/air movement and said she sounded course. Her pulmonary doctor came in and listened. After a little while of fiddling around she seemed to get a little better. But we could tell something was still off, she wasn't acting normal. Then a little bit later, it seemed like she started having trouble again. So we went through the same routine.

I started dialing through the settings on her vent and noticed that her expiratory volume was bouncing between zero and negative numbers. That's not right. And that her inspiratory time had become shorter than her expiratory time. Hmm, she's not getting her air out - or at least that's what the ventilator thinks. So we called in respiratory again to show them what was going on. They checked her connections and found the two tubes that measure her expiratory pressures were a little loose where they connect to the vent. The numbers started reading more normal.

I don't know that all that had much result in Ashleigh's breathing, but respiratory said if the ventilator could not read her expirations, it may have been giving her air when she was in the middle of an expiration. That explained the decreased inspiratory time. Her pulmonary doctor visited again because she was still not 'normal'. He continued to listen to her and turned her PEEP back up and said she sounded better. So all that to say (and this is the condensed version) they had to go back up on her PEEP and pressure support. They also want to try breathing treatments more frequently, every four hours instead of every six and see if that helps her or not. I was afraid we were getting close to her plateau for this week. I'm sure (if there are no infections looming) next week she'll be ready for another few small changes - though I don't think PEEP will be the best choice for weening.

They also want to be sure she doesn't have any kind of respiratory infection or urinary infection and they are going to do a bronch on Tuesday to see if her malacia has changed. This will help determine if weaning her PEEP is going to be possible right now. As she grows, we're expecting her malacia to become less of an issue, but we'll find out what the current status is on Tuesday.

September 28, 2006 (afternoon)
The barium swallow was today and Ashleigh did not reflux any of the liquid. She wasn't swallowing to much liquid but she swallowed enough to visualize. That gives us a green light to start feeds as long as it helps her gain weight and doesn't make her start burning weight. That is very good news. The next step is to see if she will feed by bottle and swallow. The last time we worked at this, she did not like the swallowing part, but I'm still optimistic that she can do it and will get the hang of it again.

Today, her pulmonary doctor, who has worked with her since very early on, made rounds. After talking and listening to her for a few minutes, he disconnected her circuit from her trach. Ashleigh generally doesn't get in a panic about this, we have to do it when we lift her out of the bed to hold her and stuff. But that usually take about 10-15 seconds. But he just held it close to her trach and watched her and her sats. ...a minute passed by. Her sats were at 100 (perfect) and she was just looking at him. Another minute passed by and she was at 99 - still nearly perfect. He listened to her breathing with his stethoscope while she was off the vent and said she actually sounded better off the vent. So they left her off the vent.

Okay, I made up the last sentence. Of course they didn't leave her off the vent, I got carried away in a dream. Seriously, she did very well through that and I was blown away. I had to swallow hard - not to jump up in the air and start giving everybody high fives and then break down in tears of joy to see her reach that level of 'stability'.

I still stand by my theory from yesterday about her having to work hard and having anxiety. Today was a simple two minute exercise. She was not crying and she has no infections that are menacing her airway. And her pulmonary doctor noted that as well, that the real test would be if she had a cold or got upset. His approach is to try some of these weans in shorter spurts and then begin to expand the amount of time the weans are in place. I like that approach. It introduces her body to a change and then gives her body a chance to build up reserve and energy again. I think we will find that her weight gains will be more significant with this approach.

He did go ahead and wean her pressure support to 9 (from 11) as we expected, but he also wants to start eliminating her rate (which guarantees her 6 breaths a minute and a specified amount of air volume per minute) twice a day for two hours. This means during that time she will be in full control of her breaths, when and how many per minute. I don't have concerns with this because she has been able to initiate breaths on her own for a while now. When she initiates a breath, the vent still offers her a specified volume of air.

She showed no signs of the 'no rate wean' affecting her for this morning. She slept during part of that time, which is when it would be most likely that her respirations would drop low.

Next week, if she does well with the no rate weans, he wants to start putting her on a trach collar (which just provides humidity) three times a day, starting with short spurts. That one turns up my anxiety dial a few notches. They can mix in oxygen with the trach collar if need be, but we didn't get into details on what the procedures are if she gets into trouble. My guess is they would just hook the vent circuit back up or bag her if it became urgent.

So, we will see what happens with her disposition now that we have introduced a new wean in today. I think the PEEP change just really wiped out her reserve and is taking time for her to adjust to.

Lots of good news today. I'll accept it and hope tomorrow is anything close. I almost can't believe how far she's come in two months. On July 28th, two months ago today, she had her second lung surgery. These were the two posts I made on July 28th:

July 28, 2006 (evening)
Ashleigh did go to surgery this afternoon and she did very well.  They were able to remove her upper, left lobe, and she is stable. The surgeons and doctors said she exceeded their expectations on how well she did. I can't tell you how much we thank everyone for their prayers. (I will have a more detailed update tomorrow.)

July 28, 2006 (afternoon)
It looks like Ashleigh will go to surgery later today. They are trying to ween her ventilator settings to be as low as possible prior to surgery. Please be in prayer that this surgery is what her little body needs and that she will do well through the surgery and her recovery after.

With your help, we are making progress. Thank you all for continuing to keep Ashleigh in your thoughts and prayers. I know everyone has life happening. I feel grateful that so many of you have prayed for her through this all and continue to pray for her health.

September 27, 2006 (afternoon)
Weeelll, Ashleigh let us know in about 15 seconds that the Passy-Muir is not an option for now. Apparently, her trach and trachea are too close together in size for an abundance of air to pass by. So while it was plugged into her circuit (the tubes between her and the ventilator) she was able to receive air but not release air. It created enough pressure that it popped the circuit off from her trach. We know she moves some air past her trach because from time to time (especially when she is irate) she does make a little bit of sound, but I guess it's not enough for a full expiration. They will try again in a week or so to see if she does any better. I would imagine if it is truly a size problem, it will take a while for it to work. It was certainly worth a try and I'm glad they were willing to give it a try.

They are going to do the barium swallow study tomorrow in preparation of trying to feed by bottle once again. I don't expect this test will be a huge success, but hopefully they can get her to swallow to see if there is any reflux. I've read that it tastes like liquid chalk, but that infants under 12 months like the taste. What I want to know is did the infants tell them that? Seriously though, I hope we can get some conclusive results. This study, by its design, is limited because you only see a small window of time. So many times the results are defined as inconclusive.

Since she has been on the macrodantin (antibiotic) because of urinary reflux, her stools have been a little more frequent and runny. In an effort to balance that out, they are going to start giving her lactobacillus, a 'friendly' bacteria for the intestinal tract.

Her disposition is still off. So I've finally come around to developing my theory on all this. It's really quite ridiculous that I didn't put it all together before now. Through each wean, her body is responsible for more of the task of inspiration and expiration. Her body works considerably harder to breath than any of ours. Her sats are good, so she is getting the job done, but in the process she is 1) expending significant energy to breath, and 2) experiencing anxiety about being air hungry. It's that feeling you get when you're at the bottom of the pool and start thinking you're not going to make it to the top for air. I couldn't figure out why her respiration rate increased significantly after the vent changes on Monday. It's a mental response to a mechanical change. We are built to naturally breath faster when anxiety is mixed into our mood. Her body is increasing her respiration rate because it feels the anxiety of being air hungry. That's why she has been cranky and that's why she is sleeping more. When she receives her breathing treatments, she receives a hefty volume of pure oxygen. I think she builds her emotional and physical reserve from that 10-15 minutes of oxygen. That treatment is like being handed an oxygen tank and mask for a few good breaths while you're still at the bottom of the pool. She receives those every 6 hours and I think that may very well be one thing that is keeping her pulmonary performance as good as it has been - not to mention its intended results which are to open up her airways. The responsibility of determining what her body can handle, and when, is on her pulmonary team, but I think (for the moment) she is getting close to a plateau. That's not to say she will not be able to be weaned further. I do think that we might have to begin spreading the weans out a little further. She is down fairly low on most settings now, so I'm not sure they can even make less significant weans.

Well, that's my opinion and I may or may not be right. Time will certainly tell and if I'm wrong, that's okay. It's a difficult balance and all the variables an infant can throw at you are endless. In the meantime, we will keep on doing everything we can to create a realistic path for her destination - home. All the thoughts and prayers she has been receiving are critical to that pathway becoming reality.

September 26, 2006 (evening)
Bath and trach change time tonight went a little better than the last two nights. She still got mad, red and pitched herself a little fit, but she didn't react as bad. I asked for back up tonight with her bath, so her nurse and I scrubbed her up good since she didn't have a bath last night. Even though we did trach care last night, her trach area was stinky tonight. As you know, she's been getting mad often and she sweats like crazy whens she's mad, so I'm assuming that's why her neck smelled like something you find under a teenager's bed. There is a bacteria growing in her trach as well that her body has to deal with, so that doesn't help. We cleaned around her stoma real good and replaced all the ties - so she was pretty ...and smelled good too. What more can you ask for? Her nurse took a few photos to prove it (while I was upstairs in the NICU begging for more passy's). Thank you NICU.

Please keep her in your thoughts tomorrow - we're hoping the Passy-Muir goes well.

September 26, 2006 (afternoon)
Ashleigh's pulmonologist confirmed this morning that her pressure support would be the next wean, down to 9 - from 11. This will happen on Thursday morning.

PT came today and worked with Ashleigh and showed Michelle and I some of her 'trouble spots' and things we can do that will help. She still has some resistance to bringing her arms together in the front. Her therapist said this happens extremely often with pulmonary patients because they are always stretching their chest outward to be sure it is open and they can breath. Ashleigh did well with PT today. She tolerated several positions that she is not used to.

Tomorrow she will have an x-ray of her chest done. I think the last x-ray of her chest was nearly two weeks ago, so it will be good to see how her lungs look. Two weeks ago. Did everyone catch that? There was a time when she received x-rays every two hours.

Her speech therapist will also work with her tomorrow to do the Passy-Muir, the little valve that helps her make sounds and also swallow. I am so looking forward to that and hope she tolerates it well. At some point later in the weak, they will probably do a swallow to be sure she is not aspirating. If she is not, they may try some bottle-feeding again soon. They are also going to start adding starch to her feeds to help her gain weight. Not sure if that is a man made kind of thing or of it is derived from a real food. Hopefully, it originates from something real. I'll have to ask.

She is still tolerating yesterday's wean pretty well. Her disposition is still a little cranky, though today she has been better. I didn't even give her a bath last night because she was so intolerant to being messed with. Her heart rate got above 200 just from changing her diaper. I kind of wonder if she is not getting a tummy ache from all the medicine  she gets in the evenings - on top of the continuous feeds. Her little waste factory runs pretty efficiently and certainly meets her production quota every day, so I'm not sure. Either way, tonight I'm going to have to really suds her down. Trach went okay last night, it stayed in - phew. She did get upset toward the end but I think it was because her hair in the back got looped in with the ties. Again, it was dad's fault. Poor Ashleigh and poor nurses - they're both stuck with me. Hey, I'm trying. I haven't repeated the same mistake twice ...so far.

I'm convinced all those prayers and thoughts for Ashleigh's health are being heard. It continues to be a long journey - some days starkly better than others, but I continue to cherish the thought of many people praying for Ashleigh's health and healing. Thank you.

September 25, 2006 (afternoon)
I need to make a few corrections from the post earlier this morning. They did adjust her PEEP down to 4, but they adjusted her minute volume so her pressure support did not change as I stated it did this morning. Sorry, I did not know they were going to adjust the minute volume to compensate for the difference.

She has still been sleeping a good bit today but she appers to be a little less cranky when she's awake. The test will be this evening when I give her a bath and do trach care.

PT is scheduled to work with her tomorrow sometime.

So far, the Passy Muir is still on for Wednesday and they want to do a swallow test at the same time. This is to make sure she is not aspirating anything into her lungs when she swallows.

Mom got to hold Ashleigh for a good while today. She was nervous about the vent changes, I think holding her helped.

The family I mentioned over the weekend are not from our hometown, several people have asked. I apologize for causing unwarranted concern.

Thank you for continuing to pray for Ashleigh - for her lungs and airways to continue to heal, for her kidneys to be in perfect shape and for her to continue to gain weight.

September 25, 2006 (morning)
Ashleigh is still sleeping a good bit and is fiery when she is messed with. Growth spurt? Perhaps. Getting sick? Perhaps. She's not showing any signs yet, but in the past, her sleeping a lot and her temperature have been early indicators of an infection of some kind.

During last night's trach care, she got so mad and started bucking so bad that her trach came out. I was the one holding it and was able to get it back in relatively quickly, but it made for a rather intense evening. Certainly more than I had prepared for.

They made the PEEP ween this morning down to 4 at 4 am. This also changed her pressure support from 11 to 9. Her blood gas two and a half hours later (6:30 this morning) was good: pH of 7.41 and a CO² of 44. Those are toward the higher side of normal, but within the 'normal' range. That is a huge step. I think we will all be watching very closely to see how she does today and tomorrow, especially with her new disposition in play over the last few days.

Thank you all for your continued thoughts and prayers.

September 24, 2006 (afternoon)
Ashleigh has slept quite a bit today and been a little cranky when we try to move her. All her vitals have been pretty good through the weekend. Yesterday afternoon, she appeared to be working harder, her chest and abdomen had increased rise and fall. They gave her a breathing treatment and that seemed to help. She has not done it since, so I guess the respiratory medicines she is receiving are helping.

The plan for tomorrow is to wean her PEEP. Yes, her PEEP, or baseline pressure. They planned on reducing her pressure support down quite low before adjusting the PEEP, but the other day the ventilator was at 4 (instead of 6) for a little while and she did well through it. I suppose they decided to notch away at both of them a little at a time. (Reducing the PEEP will also reduce the pressure support.) I haven't had much doubt that she would be able to do well with reduced pressure support. The PEEP is more questionable. I am extremely hopeful that she will do well, and if she does this would be a very nice step forward.

They plan to check her blood gas a few hours after the reduction to get an internal reference point on how her body tolerates the change.

Her coordination is improving, she is, at most times, able to visualize something close up and then get her hand to it and grab it. I know it sounds lame to the rest of the world, but for me that's exciting to watch. From at one point being paralyzed - to seeing the excitement in her eyes, face, and body motions, to watching her intently and methodically move her arm and fingers like a big crane, to seeing those tiny little fingers latch on - there's nothing like it.

I generally try to keep this site down to what's going on with Ashleigh and from time to time rants about my personal opinions and beliefs. I apologize that you all have to bare the rants to get the news on Ashleigh. Either way, it's generally related to Ashleigh's journey. Not because I'm selfish or that I don't care about anyone else. It's more because I could write a novel everyday on the trauma and victories that takes place daily at the hospital. There is a particular Mom there at the hospital who very early on took Michelle under her wing so to speak. She consoled her but also helped her emotionally get up off the ground on many occasions. I am forever grateful to this particular Mom. I am today, however, immensely sorrowful with her, her husband and family. They lost their son this morning. There are no words to say except that I stand beside them as they grieve.

September 22, 2006 (evening)
We finally talked with the renal doctor today about all the results of Ashleigh's VCUG study. Where do I start? I guess the bottom line is there are things that are not normal with her anatomy. The light in that statement is that the things that will cause her problems are treatable, for now with medicine. There is a small chance that she may one day require surgery and there is a chance that she may already (or in the future) have problems with her kidneys. From an external standpoint, it does not appear that she has suffered any damage to her kidneys at this point.

I learned a little more about the duplex collecting system today. On her right side, it appears she started out with two separate kidneys that grew together. All that happened during gestation. Normally, each kidney has one collecting system, so that's why she ended up with two. Doctors everywhere will be cringing, but here's my shot at describing the process. The collecting system is the central large inner part of the kidney. The part that makes up the rest of the kidney is where the blood is filtered. The kidney filters waste from the blood and the collecting system takes all the waste (urine) and pushes it down to the bladder. If you think of how a stalk of broccoli looks, the collecting system kinda looks like that. The little sprout looking things at the top of the stalk are where the waste enters from the filtration area of the kidney. It keeps going deeper into the broccoli until it reaches the stalk (uhm, ureter).  Her doctor said there are a million or so of these little small 'sprouts' (he actually called them by their name, my interpretation is sprouts) that collect the urine and push it down into the larger 'stalks' of the collecting system and into the main stalk (ureter). The ureter is not as wide as broccoli but hopefully you get the concept.) The ureter goes down to the bladder and the rest is... well, you get the picture. Bet you'll never think of broccoli the same again. Hopefully doctors won't put a hit out on me for slaughtering their profession.

They're not positive that she actually has two ureters on that side, but they are assuming she does since she has two collecting systems. The urine is flowing back into those collecting systems on both her left and right side. When she urinates, there is no way for her to completely empty her bladder because when she is done and the bladder is 'empty', what is in the ureter and in the collecting system flows back down into the bladder. So if bacteria comes in, she can't really flush it out, plus it ends up getting back up to the kidney - causing infection there too.

The reflux part comes from the ureters coming into the bladder at a no (or less of an) angle. Usually, the ureter is pinched close as the bladder expands because of the angle. This may or may not correct itself over time, but the odds are in her favor.

We had a little bit of a scare through all of this (in addition to the whole VCUG experience) because the first prophylactic antibiotic they put her on was bactrim. We discovered that is a sulfur-based chemical and Michelle is allergic to sulfur. So they switched Ashleigh to another one called macrodantin. Her stomach didn't like it and she threw it up last night. They gave it too her tonight over an hour and last we talked to the nurse, she had not spit it up.

They weaned Ashleigh's pressure support yesterday and she has so far done very well with it. They will wean again on Monday. It's looking promising at this point, but we'll take it a step at a time and a day at a time.

PT came by yesterday as well and worked with Ashleigh, encouraging her to turn her head and roll from one side to the other. I've been working with her hand skills. She is able to focus on something and grab it now (when she wants to of course).

We did not get to do the Passy-Muir today because we were meeting with her renal doctor so we are going to try to schedule it for next Wednesday.

Michelle and I did the trach change (swapping out the trach, not just the cleaning). We did pretty well. Ashleigh was tired when we started, so that made it difficult because she was cranky, but we got it done without her airway being compromised.

I'm sure I'm leaving out a ton of stuff, but I'll post later when I can sit down and think about it.

September 20, 2006 (afternoon)
Well, buckle up. The coaster ride continues. The VCUG study that we debated over so painstakingly turned out to be the right decision. There are two things going on that are not normal.

One, she does have vesicoureteral reflux - or urinary reflux. So urine is flowing back from her bladder toward her kidneys (in the ureter). This is happening in both ureters, or bilaterally. There are five stages of reflux (5 being the worst), hers is level three. Levels four and five generally end up having to be surgically corrected. All stages are generally treated with medicine first. This link explains it in greater detail.

Two, she has what's called a "Duplex Collecting System" on her right side. That means she has two ureters on one side - her right side. We do not know yet whether these are partial or full (we're waiting to talk to the renal doctor tomorrow). There are many variables on a) whether it is treated or left as is, and b) if it is treated, how it is treated. Best case scenario, it requires no treatment. Worse case scenario, it requires surgical correction. The largest variable is in how urine flows or gets backed up in the two ureters.

It gets even better. Somewhere up to 40% of siblings have urinary reflux as well. Apparently, it is genetic to some degree. If a parent is found to have reflux, then the ratio for kids goes above 60%. I'm not pointing fingers here, just regurgitating the facts, but it is more common in females than males. That freakin' Eve. We'll have to do more research and see what other contributing factors there are before considering putting Emily through testing. Though the symptoms are generally very mild (with the exception of getting UTI's), of what symptoms I have found, a few fit her.

That's enough to give you a headache, and an ulcer, and an anxiety attack. I do have to give the neonatology group and the pulmonary group credit. They suggested (on multiple occasions) that this might be something we want to test for. We put it off after the first UTI, and after the second UTI. My point is, they suggested it but did not cram it down our throats. I appreciate that.

You know I always like to get the bad news out of the way first, and thank our Creator that lately there has been good news to balance out the bad.

We talked with her speech therapist and OT today. They are going to step up some of her therapy. Her speech therapist wants to start trying a little piece called a Passy-Muir speaking valve that allows her to exhale through her mouth and nose. The result is that Ashleigh is able to pass air by her vocal chords (so she can make sounds) and it also helps create pressure that assists in normal swallowing. They will start with very small steps to be sure she is able to push air out around her trach. Otherwise, her CO² level would increase and her oxygen saturation would decrease. I'm hopeful she will be able to do well with the valve. Of course to hear her making sounds, but even more to help her begin eating again by mouth.

I can't say it is related, but since that PICC line is out, the redness and bumps on her forehead have subsided. She still has a very faint amount of splotchiness, but it not real evident at all. The bumps she had are almost completely gone. Also in the past, when I gave her a bath, her eyes and forehead would turn deep red. I just used warm water on her face to rule out any reactions. The last two nights, it has not done this. It could have been related to the infection in her eye as well, but for whatever reason, it appears to be subsiding.

We also found out that the skeletal survey they did was normal.

We also found out that the eye exam noted that everything was normal.

We will make a wean tomorrow in her pressure support. I think she is ready for it. She's doing remarkably well with her breathing right now. Michelle's knocking on wood somewhere right about now. And I'm getting to the point where I don't blame her.

We may increase her volume of feeds a little later in the week, though she has gained a little bit of weight overall this week.

Michelle and I did trach care tonight together. If I can just get Michelle to finish a sentence (and breath) during the process, we'll do okay.

I know I sound like a broken iPod, but I really appreciate all the thoughts and prayers for Ashleigh. I sure would appreciate you all continuing to pray for her health and especially that all these new discoveries will not require surgery. I can't tell you how much we hope she does not need surgery. She has been through so much already.

September 19, 2006 (afternoon)
Today we learned that Ashleigh does not have MRSA. Pheeew, and amen.

She does have MSSA, which is still a staph infection. The difference is in the level of resistance to antibiotics. MSSA (Methicillin-sensitive Staphylococcus aureus vs. Methicillin-resistant Staphylococcus aureus) MRSA requires more powerful antibiotics to treat and is sometimes called a "superbug". They will allow her body to fight the infection. Because a trach and vent offer a perfect and very regulated environment for bacteria, you don't want to treat the first bacteria that shows up unless it is compromising her health. Doing so would mean that the next bacteria that shows up may require a stronger antibiotic - so the downward spiral starts. And because its a great environment, it would be very difficult to end the cycle.

They discontinued her eye drop antibiotics today. Her eye continues to look much better.

We decided (still somewhat hesitantly) to do the VCUG study. We managed to come up with a plan to reduce the chance of her getting a UTI. She will receive 4 doses of antibiotics, one before and three after over three days to eliminate anything that might be introduced from the catheterization and dye used in the study. We tried to weigh the drawbacks and benefits as best we knew how. I still feel in my gut there is no problem. But if I'm wrong, it could lead to fairly serious kidney problems and continued UTI's. This will also help us explain or eliminate this as a cause for her elevated blood pressure. We just hope this is the best decision for her.

She gained a little bit of weight today. So over the past week, she's gained, but not really enough. Toward the end of the week, they will increase her milk volume if the trend does not improve. She's still really not on full feeds, so I think we have a little room between where we are now and the ceiling.

Little miss priss decided last night she did not want her PICC line (the IV in her head that went all the way down to her chest through blood vessels) anymore so she pulled it out. All 18.5 centimeters of it. She was only receiving one medication through it and they were able to give it orally, through the ng tube (her feeding tube). So one less entry point for infection - that's good. That's not exactly the way we had the removal planned but in the end it worked out okay. Fortunately, it did not break off in the process of all that.

Even though all this stuff swirls around her and entangles her parents like a bug in a web, she continues to make overall steady progress. There are still so many steps yet left to travel, but each step forward inches us closer to her destination - home. As I continually remind myself, one day at a time.

New photo posted.

September 18, 2006 (afternoon)
The culture for Ashleigh's eye has been identified as klebsiella. There are multiple species of this bacteria, some more potentially damaging than others. From reading about it, it appears to me more dangerous when associated with other respiratory infections like pneumonia. They will continue the drops she has been receiving. Her eye looks much better today. Hopefully, that is under control and on its way out the door.

Her forehead is still splotchy. I think the entire hospital is convinced it's because she has red hair and sensitive skin. We're not. So we'll continue to watch and see what develops or if it eventually goes away.

We still do not know anything more on the infection in her trachea. We're still hopeful it is not MSRA.

They did not make a ventilator wean today. Her CO² and pH were good, I think it was more to appease our concerns of her still having thick secretions and multiple infections right now. The next wean is scheduled for Thursday if she is still ready for it.

We will do the VCUC study on Wednesday. They are going to treat her with a dose of antibiotics before and after the study. This is to reduce the chance of her having three simultaneous infections. Theoretically, she should not become infected from the test, but in the past her catheterizations turned into UTI's. I'm not a huge proponent of antibiotics, but it's like war. When you're in the hospital, you're constantly under attack and without something to level the playing field, you're fighting a battle bare handed. So the VCUG will help us determine whether there are any anatomical issues or other problems allowing her urine to travel the wrong direction.

It's a "hold your breath and keep your eyes closed" kind of week so far. I keep squinting out of one eye to see if it's over yet. Thank you all for continuing to pray or Ashleigh's health.

September 17, 2006 (evening)
We received the first results of the cultures that were sent off on Friday (from her eye and trachea). Both are initially showing forms of pseudomonas, which is a bacteria that is very fond of moisture. They are treating her eye with an antibiotic eye drop multiple times a day and it seems to have made quite a dramatic difference thus far. Her eye is still a bit swollen but it is not running or 'goopy' any more. They will wait until the culture grows out for sure, but there is a chance we may be dealing with MRSA in her trachea. MRSA can be a very serious bacterium, increasing the mortality rate of a patient by five times. It can also sit 'dormant' in the body. Right now, they will not treat it. Because it is very resilient to antibiotics, they don't want to treat Ashleigh. It does not appear to be causing any dramatic health problems (respiratory and/or fever), so they let the body fight it off. If it begins to alter her well-being, then they will treat it. Our hope is that she does not have MRSA. We really want to be eliminating health issues at this point in her journey, not creating new ones. Especially ones that can be so serious.

The splotchiness on her forehead and around her eyes is still there mostly, it certainly intensifies when she is aroused in any way. It still has little bumps on her forehead and I noticed a near perfect circle under her right (infected) eye tonight that has bumps in it. It is a very well defined little circular shape, which is different than on her forehead. On her forehead, it kind of blends in and out of normal skin tone to red and back again.

I gave her a bath and did trach care again today. She really enjoyed her bath time tonight for the most part. We we're having a good time. Trach care, she wasn't so happy about, but she did well through it. They increased her breathing treatments (xopenex) to "q6" - every 6 hours instead of 8. She had one of those right after trach care, so was asleep in about 4 seconds after all that.

I don't know if the increase in treatments is a result of her eye infection (draining down) or the infection in her trachea (or if they are one in the same). She has certainly not been feeling as good through the weekend, it really shows up when she is tired. The treatments today made a noticeable difference in her saturation and overall demeanor. We will have to 'sit and wait' to know what kind of infection we're dealing with. Whatever it is, Ashleigh is giving it a run at taking care of it on her own. She is still on room air and has not required any more ventilator support - just the increase in breathing treatment frequency.

Ashleigh's mom and I are completely exhausted right now - mentally and physically. We continue to look forward to the day when all of this is behind us and we're worrying about Ashleigh's spelling test grades and bumped knees - much like her big sister right now. Yet at the heart of it all, I humbly ask that you keep Ashleigh in your thoughts and prayers. For healing, for encouragement, and for a will so strong that no sickness would defeat her.

September 16, 2006 (morning)
Yesterday ended up being a full day. Quite a bit of good news, and some discouraging things as well. So do you want the good news first or the bad? as I always heard growing up. I always picked the bad news first - get it out of the way.

Ashleigh's face and forehead have always been quite sensitive to touch and bathing, but late Thursday we started to notice some unusual redness and splotchiness on her forehead. By Friday morning it was still quite red and her right eye had a big wad of green goop in the bottom of it. So we got some of the goop and sent it off for testing. As far as I know, we haven't received any results yet.

The opthamologist came by for a test Ashleigh's geneticist ordered. So of course while we had her captive, we quizzed her about the goop. She explained that glands above each eye release tears. Once those tears run across the eye they drain into the tear duct openings. The tears end up in a sac called the lacrimal sac which is close to the inner corner of the eye. The tears then pass through the sacs into the nasolacrimal ducts that drain into the nose. From there the tears go down the throat. She said many babies are born with a membrane covering the nasolacrimal duct so the tears cannot drain. If they can't drain, then they sit there in the sac and get infected, often backing out of the sac and back into the eye. Fortunately, the membrane generally gets out of the way on its own. Unfortunately, that takes up to a year and now we have a swollen eye, a runny nose, a spoltchy forehead and goopy stuff draining into her throat. You can see where I'm going with this. Yes, that means it could cause respiratory issues as it does cause the mucous in her lungs to thicken.

We tried a cream yesterday on her forehead but it seemed to make it worse. From what I have read, any infection in the eye often causes skin irritation around the eye, though it's generally under the eye - not above it.

Ashleigh also took a little field trip yesterday. The other test her geneticist ordered was a full skeletal survey. So they took x-rays of her from head to toe. He feels confident he will not find anything, but wants to exhaust that as a clue to any other disorders. Much to my surprise, she was not glowing when they were done. The field trip almost made it worth while. That's pretty sad isn't it?

The other thing we're not real crazy over is that they want to do a VCUG on Monday. The results of this test will determine if Ashleigh has Reflux Nephropathy, or urinary reflux. This is a condition where the urine travels back up the tube (ureter) to the kidneys. It can cause urinary tract infections, kidney scarring and possible high blood pressure. From my research, one third of children who have UTI's have reflux. Ashleigh has had two. Though both times she was catheterized and sedated at some level. Though the ureter is towards the front of the bladder, if you're laying down, it would seem more likely that this could happen. You're still challenging gravity with a full bladder. In fact, out of the three most common infections for patients in hospitals, one of them is urinary tract infection. So she has had UTI's (though the cause is questionable), she does border on high blood pressure (though she does have respiratory issues) - so do you do the test or not? I'm not sure yet.

On to the good stuff.

First and foremost, after some prodding from Michelle - they took a blood gas yesterday. Remember they weened her pressure support by two on Thursday. Her CO² was 44 (very good) and her pH was right in range too.

Her trach was changed yesterday also. Due to logistics, I was not able to participate. Michelle was there and she said the trach they removed had lots of mucous in it. I see a trach change coming early next week again if her eye stuff continues. She tolerated the change well (from what I was told).

The geneticist came by again today and said after talking with Ashleigh's other doctors and attempting to match up her symptoms  to known issues, he feels very strongly the complications she has lived through are not genetic problems - rather developmental problems that may, or may not, be able to be pinpointed.

In hindsight, we know part of the reason why Ashleigh's lungs took the course they did - a combination of malacia and a narrow left bronchus. Why she suffered from those two issues are what he is referring too - we might not be able to find the root cause for.

Using as much knowledge as we have today to rule out a genetic issue is quite comforting. As her geneticist pointed out, generally genetic problems would be global for all of her lungs, not just one lobe. At her age, a global problem would be terminal. I'm told medicine and technology have not advanced to that degree yet. Getting as close to ruling out a genetic defect as a possibility implies that we dramatically reduce the chance of the same problem affecting the rest of her lungs. That is huge.

Ashleigh has gained a little bit of weight the last two nights. I forgot to ask about this morning. If she continues to do that, feeding by bottle will in her future over the next few weeks.

Thank you all for your encouragment and prayer through this all. As I sit here and think about all that has happened in the last two weeks with Ashleigh, I'm overwhelmed. She was moved to the LTV (home ventilator) on September 5. She was moved to the pulmonary unit on September 11. Those are two incredibly huge steps. I would be thrilled to be able to take a look back two weeks from now and see half that much progress.

September 14, 2006 (afternoon)
We ended up doing trach care twice last night. 'Trach care' is when you remove the ties from the trach and from around her neck, clean and inspect the skin for any rash or breakdown and then put new ties on. There are actually two different ties, one that holds the trach in place and the second helps hold the ventilator assembly - where it connects to the trach - in place. There is also a piece of foam that goes between her skin and the trach. The biggest priority is keeping the trach in the stoma (I really prefer that stays put), so one person holds the trach and the vent assembly -literally- in place while the other person cleans, replaces the ties and foam.

Tuesday night, Ashleigh's nurse and myself had a hard time getting the foam in place and it took us forever. Last night, we had it done (the first time) in about 15 minutes. We were all proud of ourselves and stuff. Then we gave Ashleigh her vitamins. It's some nasty, sticky, smelly junk so I can only imagine how it must taste. She doesn't have a good track record with 'keeping' her vitamins and last night was no different. Unfortunately when she 'lost' her vitamins, she lost them all over her trach ties and foam. So back to square one were we.

That's okay, because the second time we made even better time. Don't get me wrong, it's not all about time. But as you can imagine, the smoother the process goes, the easier it is on Ashleigh and the less irritable she gets. And so it is easier on everyone - especially the person holding the trach in place. When she starts bucking and sliding and turning and kicking and wailing her arms, it becomes difficult to hold the trach in place, much less put the ties on.

The first reduction in pressure was made today, down by two. So she now receives receives "7 over EEP", or 13 in her case. She is still breathing 'room air' and on a rate of 6. Those are two strong positives. She has tolerated the wean well so far today. The pulmonary unit generally does not do blood gases as often. They are planning on doing one next Monday after her next wean, unless they have a reason to do one before then. It appeared she was working a little bit more this afternoon, but each of these steps will test and stretch her some. To get muscles, we exercise. These weans exercise her diaphragm, lungs and body in general. We just want to be sure she is on a regimen her body can handle.

She is beginning speech therapy and continuing with PT and OT, even though she is not feeding by mouth. They want to continue to exercise muscles used to eat and continue to stimulate her mouth area so she gets used to things around, and even in, her mouth. This will help her when she is ready to start feeding again by mouth.

Her geneticist also came by today and said they still wanted to try and determine why her lungs caused such a problem. They feel very strongly that Treacher Collins is not what she has at any level. He was upfront in saying that they may end up not really knowing. That's my gut feeling as well, but it is certainly worth researching existing data and trying to find anything similar that could possibly help us down the road. Since the batteries in my crystal ball need to be recharged, I'm on board for seeking an answer that may help her in the future.

Sorry for the long update today. It turned out to be quite a busy day. I hope that as you read these updates, you can see your thoughts and prayers for her health being realized. I surely cannot see tomorrow or the next, but I can clearly see where she has come - and plan to use that as faith for her future. One month ago, we sat around a table with her care team in an effort to put a path together for her. We didn't know then where we would be today, but I can tell you my eyes are flooded realizing that she has made it this far along the path that has many forks and dead ends.



September 13, 2006 (morning)
Tomorrow her pulmonary team will begin to wean the pressure support she is receiving. They have to determine two things: 1) can her lungs support the capacity of air she needs to breath, and 2) can her airways stay open in the process. Reducing the pressure support is the first step in determining whether her lungs can support her breathing. As they reduce the pressure support, it will reduce the amount of help she receives from the ventilator to reach a certain volume of air during each breath. Currently, that number is 15 cm H2O. They will begin weaning by two's and each ween will span over several days. If she continues to be stable, they will continue to wean the pressure support. If not, they will backup.

As of right now, the last thing that will be determined is whether her airways can remain open without the assistance of the ventilator.

There is a lot to be determined and the common question now is when will we get to come home. Unfortunately, there is really no way to accurately know. We know it will be at least multiple months, but we are hopeful that it will be before the years end. It depends on how Ashleigh tolerates the process of finding out what her body/lungs can and cannot do.

Yes, it is extremely frustrating to not know. I could go into a long epic of things that are frustrating, but we all have frustrations. In the end, how we deal with them determines what kind of person we become and what kind of person we do not.

Please keep praying for Ashleigh's lungs and airways and for her entire care team, that they will clearly see when to push and when to hold.

September 12, 2006 (morning)
Ashleigh had a pretty good night besides her old dad dragging out the bathing and trach cleaning process. After all that was over, she konked out for quite a while. I was ready to konk out after that myself. They weigh in the mornings so we should find out later today whether she gained or lost weight. They do things a little different in the Pulmonary Unit so we're still trying to get used to it all.

I've got to do some traveling today so there will likely not be an update until later tonight.

Remembrance of September 11, 2006
The date today will be remembered by multiple generations as a day of loss, a day of vulnerability, and a day of heroism. Let us always stand near the families who are still with us after the loss of a dad, a mom, a child, or sibling, ...or even a best friend. Let this day also be a reminder to each of us just how fragile our own personal ecosystems are. We cannot control much that goes on around us, but we can control our own attitude. Each morning that we are able to take a breath, we have a choice about how powerful of an impact our lives will make on others and what kind of memories we choose to leave behind - when something far beyond our control takes over.

May the generation of Ashleigh's age never have to experience such sorrow.

September 11, 2006 (afternoon)
Ashleigh's feeds went up by one more today, so she is now on 22 ml/hour - and no more HAF, so it's up to her tummy and intestines to make it all come together.

I mentioned last night that I might have some very exciting news today. And I do.

Ashleigh was moved to the pulmonary unit earlier today. She is no longer in the Neonatal Intensive Care Unit. The eventual next 'natural' step in the process is home, though it will be months still. It is going to take a little getting used to. We literally knew every nurse, practictioner and respiratory therapist in the NICU. Now everyone is a stranger - to us and to Ashleigh. It was like a new job or the first day at a new school. I hope we come to love them as much as we do everyone from the NICU. Although I am quite sure we were the topic of conversation more than once or twice (and I don't mean in a flattering way), we felt like we were part of the decision making process and grew very close to those who took care of Ashleigh frequently.

We met the attending pulmonologist for this month and got everything put away, so she has officially moved in. She seems to have adjusted well so far. She took a little short nap before I left earlier.

Now more than ever, the healing of her lungs and strengthening of her airways will be vital for how long she remains hospitalized, all in the midst of avoiding any set backs.

I find it very interesting that on this day five years ago such a horrific thing happened, but then immediately after an amazing thing happened. People came together, prayed together, worked together and focused on what mattered. Our horrific journey was June and July. And in the spirit of nine/eleven, everyone instantly came together and prayed for Ashleigh. The doctors and her care team worked together and focused on what mattered. And today is one big step in the payoff - one step closer to her destination - home.

September 10, 2006 (evening)
Ashleigh spent a good bit of the day sleeping today.  Her weight is still teetering up and down a little bit each night. She is tolerating the additional feeds very well, so there is a chance those will increase soon again.

Her nose was not running today so whatever it was ran a very short course - and that's perfectly okay with me.

She was moving her head left to right extremely well today. I was very impressed.

Please continue to pray for her healing, for her lungs to continue functioning well and for her bronchomalacia and tracheomalacia to rapidly heal and allow her body to not be dependant on the ventilator for breathing. How far she has come for us to have the opportunity to pray for her to come off the ventilator. She is definitely a miracle baby in my eyes.

We're expecting some very exciting news tomorrow (Monday). I'll keep you all posted.

September 9, 2006 (evening)
Ashleigh is off of HAF (IV feeds). She's now down to fortified breastmilk and a little extra fluid for calories. She's been bumped up to 21 ml/hour through the day, still by OG tube.

We're still working on her weight gains. Hopefully she'll be able to tolerate the additional feeds.

She had a bit of a nasal drip this morning and a few sneezes. The nurse said her nose wasn't draining tonight. Ashleigh has a thing for testing our "health improvement skills" over the weekend. Hopefully it was a temporary thing.

Ashleigh's big sister was able to hold her today (see photos page). Ashleigh was all about that. She just stared at Emily's face and hair.

Another trach change tomorrow. Phew, slow - deep - breathing.

Thank you for your continued thoughts and prayers for Ashleigh - and for the trach changes.

September 8, 2006 (afternoon)
No vent changes today. Small food changes. She's now up to 19 ml/hour on feeds and down to 2 ml/hour on HAF. All OG (by tube).

Michelle and I changed the trach today. It went... not too bad. Ashleigh did fine other than getting really hacked off at us for being amateurs. We promised her we would get better. She wasn't impressed.

She's been a little ill tempered today again. Not many smiles at all.

She did gain weight last night. She's still shy of 8 lbs, but atleast she moved in the right direction. I mentioned yesterday I was skeptical stopping PO feeds was enough to make a difference. Another day or two of weight gains and my skepticism will be put to rest. Her neonatologist said that it may take a few days with the extra calories to start making a difference. And since they increased her feeds today also, maybe she'll keep heading in the right direction through the weekend.

Thank you all for your continued thoughts and prayers for Ashleigh's health and recovery.

September 7, 2006 (afternoon)
Michelle did very well changing the trach today. She was nervous, but did well. They want us to practice more often and promise it won't hurt Ashleigh. It does make her a mad, but not too bad. I think it's more from being held down than anything else. So, we're changing the trach together tomorrow (Michelle and myself). The airway nurse was the other person in both cases previously.

Her CO2 this morning was really good so we are now in the single digits on her vent rate. She is now only guaranteed 6 breathes per minute now. It's up to her to do the rest. So far - so good. They did not ween the pressures.

They increased her feeds slightly and changed the fortifier to a different brand. They also increased the calories per ml to 27, from 24. We think the first kind of fortifier may have been causing her stomach aches. Her neonatologist also wants to hold off on PO (bottle) feeds for a week or so because she has lost weight over the last two nights. He wants to preserve as many calories as possible so she can get on a weight gaining trend. I think the larger calorie consumption has come from her increased responsibility of breathing, but we kind of have to work around that one - certainly don't want to take that away. I'm a little skeptical that stopping PO feeds will be enough to make a difference, but I see his point. Before, they were stopping feeds ahead so she would be hungry, then she wouldn't take it all by bottle. Then they would give it to her by bolus to catch up. So by the time all that happened (if she didn't spit it up) she probably burned more calories than she took in. In addition, taking it by mouth (I would imagine) takes a few more calories to digest than delivering it straight to her stomach. We'll see if it helps. It certainly won't hurt for a week to see.

They did reduce her HAF to 3 ml/hour today as well.

There is a 'rumbling' that Ashleigh may be going to the pulmonary floor soon. Stay tuned. She has to go to the pulmonary floor before we can go home. So as much as we hate to leave the NICU and all the awesome care she has received there, we won't let the door hit us where the dog should've bit us either.

She slept a whole lot today and her mood is still mostly off. We were told she didn't get much sleep last night, so I guess she was catching up. Probably still getting used to the new ventilator too. Please continue to pray that Ashleigh will exceed expectations and continue to heal as we go through these next few steps in the process. We are very excited that we are making very good progress, but still very aware that it wouldn't take much to cause a significant set back.

September 6, 2006 (afternoon)
Ashleigh is off morphine. It will take some time (weeks to months) to get her off of methadone, but that will be the final step in 'detoxing' her body of the medications. How awesome is that!? That is certainly an answered prayer. Thank you.

She seems to be doing pretty well on the LTV. They did not make any more weens today to the vent. She's scheduled for a blood gas tomorrow morning, so we'll see where she is. She looks a little on the pale side to me today, but it could have been the lighting or clothing she has on. I think her body is still trying to adjust to the mechanical differences and vent setting changes. She's not quite as easily impressed and her interactions are more cumbersome. Her sleeping pattern hasn't changed significantly so I (personally) don't think it's a matter of not enough, or too much, air. I think her body is adjusting to a change. That's my two cents.

They are going to keep her on penicilin for 7 to 10 days to be sure the bacteria is completely gone. The infection didn't have such a long name when I heard it again today. It is enterococcus. I guess I was just distracted yesterday.

A few small adjustments to her feeds was made today in an effort to deliver more calories. They took her off of lipids yesterday and reduced her HAF to 4 ml/hour today. Her breastmilk (and the fortifier supplement) will be delivering the greatest percentage of calories and fat to her now. She will still have three opportunities a day to feed from the bottle.

Once again, thank you for your continued prayers. On average she is gradually looking, and acting, more and more like a normal well baby. Any normal parent would go into cardiac arrest if they turned the corner and their baby was suddenly hooked up to all the stuff Ashleigh is. It can be very intimidating when you see it with fresh eyes. But as for myself, I've grown accustomed to looking past all that stuff and focusing on her face, her eyes and her smile. It is a reality check when I think that she will likely come home with mechanical support. Mechanical support that we are responsible for keeping tuned and running. But man, how awesome it is that she is still here with us and I'm even talking about her coming home.

September 5, 2006 (afternoon)
I've mentioned before that walking down the hall to the NICU always gives me a little bit of a stomach rumbling feeling. She's clearly made progress, but I've only grown out of that a little bit. So today was what we thought might be a fairly normal day. (insert ridiculing laughter) Sure we have a new neonatologist and neonatologist fellow this month, but we were under the impression that things wouldn't change drastically. (insert ridiculing laughter, again) So what changes were made, you ask? Well, they decided to move her to an LTV this morning (the ventilator that she will could come home with). Okay, that's cool, very excited about that. Apparently, Ashleigh thought was cool too because her CO² went below 30 after being on it for an hour or so. We were told that having a  CO² too low is as dangerous as having one too high. So they made a few adjustments. They weened her rate to 10 (from 15) and also weened her pressure once, then again, and then one more time. I think she's on a pressure support of 9 now, she was on 12 earlier this morning. At last check her CO²  was at 36 and last we heard they are going to let that ride for now.

We didn't to freaked out today from the weens because I think some of it was the difference in the machinery. She's been very steady over the last two weeks or so keeping her CO² in the mid 40's. Seems like it had to be the machinery change that dropped it to 29 earlier. So some of the weens were probably really more like adjustments to get her back to where she was before. Thankfully, those were decreases, not increases. They have not weened the EEP or base pressure.

Her neonatologist felt like she really needed far more calories a day, so he will be more aggressive with increasing her food/calorie intake. His first step in doing so is to put additional calories in Ashleigh's breastmilk. They do this with HMF (Human Milk Fortifier). Ashleigh spit that stuff up the first time it was added to her feeds but that was when she was only a few weeks old. Hopefully she will be able to tolerate it a little better now that she is older. So far so good. They still want to keep her on the HAF (IV feeds), but talked about not doing it as a continuous drip, maybe only doing it at night or day. This will give her liver a break. Right now they said her liver was handling it fine. My opinion is let's keep it that way. At any rate, hopefully she'll be off of it soon. As her neonatologist pointed out today, keeping her growing is one of the best ways to increase her health.

Her blood infection was finally identified today. Couldn't tell you what it was. I know it was a round bacteria - coccus. Didn't catch his full name ...and probably couldn't spell it if I did. They switched her antibiotics to penicillin, to keep the other two she was on as a back up - in case her body needs a more potent antibiotic later. I guess she'll be on that for a few more days. Antibiotic treatments somehow always equal a football score: 3 days, 7 days, etc - and touchbacks count.

So far, she's done well with the changes. We think she will sleep good tonight. For one, she's dealt with multiple changes today. Secondly, she was awake a good bit today. Her mood wasn't quite as good as it was yesterday, but she wasn't in a bad mood at all. Michelle will change Ashleigh's trach this week for the first time. She's nervous about seeing "the hole". It is fairly disconcerting to see a hole in your daughter's neck, but it is essential not only for survival but also for her continual healing.

Thank you all for your continued thoughts and prayers. We are very grateful.

September 4, 2006 (afternoon)
We are now up to 16 ml/hour on her feeds. She has been tolerating it well so far. She took 10 cc's by mouth yesterday. We were so happy. Hopefully she can remember whatever she did and keep on improving her coordination.

OT came and worked with her this morning. Her range of motion is improving. She held her hands/arms together for a moment today. A week or so ago that was painful to her.

We still do not know what type of infection she has/had. The antibiotics seem to be eradicating whatever it was because she has not run a fever and has been in a good mood when she's awake lately.

Over the last two days they have weened her pressure support by two. This does not affect the EEP, the air left in at the end of a breath, but does affect her inspiratory pressure. This number equals the minimum amount of pressure the ventilator gives when she initiates a breath. The lower that number goes (I'm assuming) the harder her lungs have to work to process the breath. So far she has done okay with that. I'm withholding judgment however. In the past it sometimes takes 2, or even 3, days to really see the results of an adjustment. If it does cause her to work harder, (in the past) over a few days she wears down. I'm extremely hopeful that if we continue to take very small steps and allow her body to adjust accordingly, she will be able to tolerate vast reductions in breath assistance. We expect that to be a different story when it comes to her base pressure (EEP).

We'll meet the neonatologist on rotation for September tomorrow. For those of you who have been praying for Ashleigh - thank you. I'm asking that you please keep our family in prayer as well. We are starting the fourth month of attempting to keep everything in acceptable balance when the weight of every aspect of life changes by the moment.

September 2, 2006 (evening)
Ashleigh's fever subsided by afternoon today. Her temperature is still on the higher side of normal, but we can work with that. We found out this evening that her blood is positive for some type of bacteria. We will not know until the morning what we're dealing with. For now, she is sleeping a lot and is not running a fever. She is on two antibiotics which appear to be taking care of whatever infection she has, just based on her temperature. Her heart rate earlier today was bouncing around the 200 rate, this evening it came down and was hovering near more normal numbers for her. Hopefully, the night will continue on that path.

Thank you each for your thoughts and prayers.

September 2, 2006 (morning)
Ashleigh's mom and dad didn't get a whole lot of sleep last night. Her fever continued through the night and by early this morning, even after giving her Tylenol, got up to 104° F. They went ahead and did a full work up to try and determine the cause. That meant blood samples, urine samples and they also did a spinal tap to check for meningitis. She spit up yesterday quite a bit and nausea and fever are symptoms (along with headache and stiff neck) for meningitis. We feel like there's only a small chance - but at this point it would be better to catch something like that in the early stages.

All of those tests are cultures so they will take time to grow out - 24 hours, 48 hours. Right now, there just watching her temp to be sure it doesn't go back up beyond 38° C (100.4°F). It finally went down early this morning after a few doses of Tylenol. She's been sleeping all morning. She had an extra dose of morphine this morning when they did the spinal tap, but that has probably worn off by now. No weening on her morphine drip today.

They did go ahead and start two antibiotics this morning (tobramycin and vancomycin) to start treating most types of bacterial infection (those also treat menigitis).

It's the weekend, so we have a different neonatologist on today and tomorrow. He's very familiar with Ashleigh because he was on rotation in July. He weened her ventilator rate significantly this morning. That's a shift in how things were done last month, but they will check her pH and blood gas this afternoon to be sure she's handling it well. Theoretically, it should not affect her because she is breathing well over the number of breaths the ventilator guarantees, but she is not theoretical and tends to write her own textbook. Getting the blood gas will give us an indication. Hopefully, she will handle it well (even though she's not feeling well). If not, they will surely raise either the rate or oxygen concentrate.

Please keep her in your thoughts and prayers today. When an infant starts running a high-grade fever (really any age person) in a hospital NICU, you never know what you're going to be faced with. Our prayer is that it is something her body can overcome quickly and not cause any setbacks for her. She's had enough of those.

September 1, 2006 (evening)
Today started off with a few small weens. Down to .1 on the morphine drip and down to 21 on her vent rate. Over a short period of time, the morphine went back up to .2. Her day today was not one of her better days over the past week. She was a little irritable, she had several large spit-ups, several loose and large bowel movements. And when I say large, I'm talking four wipes for that spill - at least the one I cleaned up after anyway. I thought I was going to have to call in reinforcements.

She's been borderline feverish pretty much all day today. She did finally show a fever of 38.6 C° (101.48 F°) late this evening, so they are going to give her Tylenol again and see if her temp stablizes through the night. If not, they'll probably do a CBC (at some point) and see if there is any level of infection going on. Right now they are attributing all the symptoms to the immunization shots she received on Wednesday.

I guess the good news is that I was so almost right about her feeds today. She took 7 cc's this morning (I was saying 8). To be honest though, most of that was from a syringe, not from a bottle. But the point is - she swallowed all that by herself.

Hopefully they're right about the immunization shots and her day tomorrow will be better.

It's shift change time again for neonatologists. This month (September) will bring a neonatoligist that we have never met with, but everyone we've talked to speaks very highly of him. Hopefully Ashleigh will like him.

This next Thursday will start Ashleigh's fourth month here at Children's. The summary I heard today was something like: "June was a little rocky, July was very rocky, August was better." Hopefully by the end of September we can add to that "She rocked in September."

The coaster ride continues on, ...weekends, holidays and all. Thank you all for your continued thoughts and prayers for Ashleigh. And thank you to everyone that has helped during the last three months, all along the way. No matter how little of a favor it seemed, it was monstrous to us.