August 2006

August 31, 2006 (afternoon)
Ashleigh is 92 days old today. By the calendar (and more popular way to count it), she's three month's old today. Happy b-day big girl.

Michelle changed out Ashleigh's trach ties today while I held the trach in place. It went pretty well. Ashleigh really does not care for that process at all, but those ties have to be changed out, they get stinky quick - plus you really just don't want them to get soiled. So when I say "pretty well", you have to keep in mind she's not smiling and just sitting still through the process. There is certainly a fair amount of red-facing, kicking and pushing against the ventilator (breaths). That can be stressful for a parent, especially when we're just learning. I think it will get easier for us all as we continue to do it more frequently. So 'went well' really means that we did not restrict her airway, the trach stayed in place during the process, she did not desat or turn blue, and neither mom, nor dad, passed out in the process.

OT worked with Ashleigh a little earlier this morning and she is still not real sure about sucking and swallowing at the same time. Tomorrow is going to be her breakthrough day - she's going to take 8 cc's by mouth tomorrow.

Even though today was officially morphine weening day (which they did), they also went down on her respiratory rate to 23. From what we discussed today, the plan is to continue to lower the rate until we reach single digits, then start weening the pressures. The morphine (if all things continue) will be turned off on Saturday. She didn't seem to mind either change today while I was there, but the effect of both of those may take hours (or days) to show up clearly.

She is getting Tylenol still because of her shots yesterday. She seems to be doing okay with them so hopefully they will not cause any blips in the radar for her.

Her weight is almost back up to where she was two nights ago. We're kind of thinking that maybe something mechanical happened. That's a decent amount of weight to lose in one day and put back on the next.

Thank you all for your emails, posts and prayers. It is very nice to know that everyone is still hanging in there with us.

August 30, 2006 (afternoon)
Sorry, but here is the Reader's Digest version of an update for right now:
› I changed her trach out today (with guidance and help from the airway nurse).
› Michelle is going to change the trach straps tomorrow.
› Ashleigh got her two month old shots today (and will be getting Tylenol for hours to come).
› They weened the ventilator pressure today by one.
› Tomorrow they will bring her morphine down to a continuous rate of .2.
› Saturday they will turn off her morphine (she is still getting methadone to help from withdrawals).
› She lost nearly 4 ounces of weight last night so they upped her breastmilk a little bit (12 ml/hour) and are going to continue the HAF and lipids for a little longer.
› PT came and worked with Ashleigh this morning. They think her right foot may have a little bit of "drop foot", but the range of motion is good, so they will continue to exercise.
› OT is going to work with her this afternoon on bottle feeds and then she will have three feeds a day to help her practice and try to increase her calorie intake.
› I got the first ever 'high-five' from a physician today.

August 29, 2006 (afternoon)
So fewer changes today which is okay. I think she was up for a "not-so-ween-ie" kind of day. Get it? Yeah, ...nevermind.

They kept her feeds the same today, but she did take 5 cc's this morning with OT. (big smile) She wouldn't swallow with the bottle in her mouth, but would swallow with milk in her mouth. Guess she still needs to relearn that 'suck, then swallow' part. That's great progress. Her neonatologist was very happy.

As planned, they weened her morphine by two-tenths. She seemed a little agitated this morning, but not sure if that's related to less medicine or something unknown. She was working a little harder to breath this morning as well, but in her defense she is doing more of the work. I think some of it was positional because later she didn't seem to be pulling so much. As I mentioned yesterday, I think the ventilator reductions might have to be smaller steps until we get low enough that her body 'knows' it's doing all the work. I'm hopeful that she justs blows my theory out of the water. But she has been completely dependant on the vent for two months (give or take), so I think it will take some adjustment on her part to do all the breathing on her own. In addition, all the volumes and pressures change as the rate is reduced, so they may have to tweak other settings as we go - which has been discussed over the last few days.

Her care team also wants PT to look at her feet. Because she's been laying down so long, they think the muscles (shin area) may have stretched causing her feet to lay parallel to her legs instead of perpendicular (out - like when you stand up). It sounded like something that could be solved by exercising those muscles.  PT should be back this week, so we'll find out more then.

Just as Michelle and I were about to leave, we got this picture today. These are the kind that have to be shared. One of the nurses today remarked at how incredibly amazing it is to see her smiling after all that she has been through. ...Amen. Amen indeed.



August 28, 2006 (evening)
Quite a few changes made today. I feel like I'm releasing a new version of software or something.

The biggest change is her ventilator rate - down to 25. I scrolled back in the posts and on August 15 she was on 40 breaths per minute. That may not sound like a big difference, but that means the ventilator is only supplying her with (almost) half the breaths she was being given just two weeks ago. Looking at those numbers shows she is able to do more of the work on her own. I think we will reach a point where the deceleration rate may have to be ...well, decelerated. I don't know where that mark is. I say that because the lower that number goes, the lower her tidal volume (amount of air in each breath) can go over each minute. That in turn, adjusts how much work her body and lungs have to do over a minute, an hour, a day, and on. Our goal is for the ventilator to only give her pressure support (EEP). In that case, she'll be managing all the breaths (essentially controlling her own tidal volume) and the ventilator will help keep her airways open.

The HAF (intravenous feeds) that she has been getting will be gone by tomorrow evening. They may continue to give her fluids, but no more intravenous feeds. It will all be up to her tummy. Very good change. OT came and worked with her this morning. From what I heard she did about the same, taking about 2 cc's.

OT is going to come back in the morning and work with her again on taking the bottle. They are going to stop her feeds two hours before so maybe she'll be hungry/hungrier and show that bottle who's boss.

They increased her feeds today but had to come back down. She spit up. From what I was told, it was a good bit. I don't know if that will affect her coming off of HAF tomorrow or not. They may try to increase her feeds tomorrow and see how she does first.

PT came today while we were there. Ashleigh has two primary 'tense' spots (glad they didn't check me). She has a somewhat limited range of motion in her neck/head side to side so the neck muscles need to be stretched out and across her back (shoulder blade area). Those back muscles are limiting her ability to bring her arms together in the front. They said these were both normal for babies that have been sick and stuck laying in a bed. They'll come by 2-3 times a week to work with her, and of course we can work with her too in between. Not bad for missing two months of her life.

They plan to ween her morphine down by two-tenths tomorrow instead of one-tenth like they have been doing every other day.

I gave her a bath tonight and she did well through it. She is becoming a little less sensitive to touch (when she's in the mood for it). I got caught up in it all and dressed her before I put lotion on her. Woops. Hey, I did brush her hair. I thought I did pretty good for remembering to do that.

I think that was everything. It turned out to be a busy day for Ashleigh. She was ready to hit the sack tonight after her bath though she was fighting sleep. She doesn't want to miss anything. I don't blame her, I don't want to take it all in too.

August 28, 2006 (morning)
The blood gas this morning showed that Ashleigh is doing very well breathing with the ventilator. Her CO₂ was in the 40's, which is actually too good. Based on that, weens will surely continue this week. Weening the vent settings will allow her to do more and more of the breathing work on her own. I don't know how to put that into perspective for everyone. For some it might be like finding out you're getting a handsome tax refund at the end of the year, for others it might be compared to a successful life-saving surgery. The only way I can express it is to say 'light at the end of the tunnel.' Keep up the good healing Ashleigh!

Her temperature overnight stayed in the normal range and they even had to cover her back up. Her heart rate came back down late yesterday. When I visited her last night she was sleeping and it was in the 130's - which is a perfect resting rate for her. I don't know what the elevated heart rate and 'running warm' was all about yesterday.

Today, Ashleigh should get a visit from OT and PT. Hopefully, she'll have interest in the bottle today. She's taking the increased feeds from yesterday okay, so we know it's not a capacity issue. She just has to get used to sucking and swallowing again. I think she will make progress this week. I'm going to go out on a limb and predict she will be sucking 8 cc's before the end of the week.

Thank you. For everyone to read this and forward it around to other family members and pray for Ashleigh ...is unbelievably comforting. Updating here is sometimes hard, and sometimes very joyous. But no matter how I feel about it, if each one of you was not here to read the updates and forward the web site around and post encouragment and pray prayers - this site would be worthless. A book that was never read. I'm grateful that each of you care enough about Ashleigh to continue to read, and forward, and post and pray. Very grateful.

August 27, 2006 (afternoon)
This morning, Ashleigh's expressions included less smiles and more blank stares. Her temperature has been bumping the higher side of normal - off and on. Her heart rate has been more elevated (180's) today than it has in the past week. A CBC was done earlier this afternoon to see if anything showed up. Her white blood cell count is somewhat elevated, but they believe that may be from the wound near her trach still healing.

On the flip side of things, they weened her morphine down slightly again today, they increased her milk intake to 11 cc's per hour, and decreased the HAF (Hyperalimentation Fluid - fluid for intravenous feeding). Prolonged periods of intravenous feedings can cause liver problems (like liver inflammation, abnormal bile flow and fat accumulation in the liver). It's a balanced increase/decrease process to be sure Ashleigh gets everything she needs physically, but getting off the HAF as quickly as possible is the goal. She's been on it now about two months. As she can tolerate more and more in her tummy, the fluids will be reduced to nothing. We hope she will be able to take more and more of that amount by bottle this week.

Tomorrow morning they will get a blood gas to measure the level of CO₂ in her blood. This will let us know whether the ventilator settings are just right, low or high. The plan is to ween the vent settings again tommorrow. Knowing how she is doing on the current settings will help make or break that decision.

Hopefully whatever is bothering Ashleigh today is not an infection or virus and is something she will be able to easily work through. Thank you for your continued thoughts and prayers.

August 26, 2006 (morning)
Ashleigh slept through the night last night - all the way through the night. Hmmm, maybe she's in a growth spurt. She did gain around 100 grams last night (a little over 3 ounces). I have not been to the hospital yet this morning, but the nurse said she did good with her bath and trach change earlier. Michelle and I went to visit with her last night and she slept the entire time, so we're eager to see her little fiesty self awake this morning.

From the update yesterday, you know she is getting 6 cc's an hour continuous. She did not have any spit ups last night so hopefully her tummy and intestines are awake and adjusting well to food. I don't know if OT works over the weekend or not, so I don't know if Ashleigh will get any 'official' practice with a bottle or not.

I like to think positive, but when she sleeps this much, it kind of makes you have to wonder what the next day holds. She has not run a fever, she hasn't spit up, her color is good, when she's awake she's been in a good mood, so we're leaning towards a growth spurt or some answer of that sort. Thank you for your thoughts and prayers for her 'growth spurt' over the weekend.

August 25, 2006 (afternooon)
One more day of morphine weening. Step by step. They increased her feeds to 6 cc's per hour. If we can get her to suck from a bottle, we should be able to start feeding her almost like a normal baby. I think she will get there with time.

She has been sleeping a good bit. Not sure if that is from playing catch up from the days where she stayed awake so long, if that's an early indicator that we might have over weened the ventilator, or if her body is getting used to additional food and it's taking extra energy. Or of course, it could be any, all, or none of those.

Michelle was able to hold her earlier this morning for a while. Ashleigh seemed to be more comfortable with being held today. Maybe she is getting a little more used to it.

Her weekly trach change was today. They started teaching us a little more about trach care today and we had to get everything ready for the nurses to change it out. Michelle and I observed, but next time one of us will participate and then at some point, we will be doing it on our own. The stoma (hole in her neck where the trach goes) looked good from a healing standpoint. She still has a pretty nasty crater from the first night she had the trach, but it's healing and doesn't look nearly as bad as it did originally.

Her smiles are more addictive than prescription diet pills, we're ready for more. We'll see what the weekend brings - hopefully healing and smiles. Thank you all for your continued prayers.

August 24, 2006 (afternooon)
Ashleigh had a good night last night. They did not have to give her any medication to help her go to sleep and she slept for like 7 hours. She was in a good mood this morning and I was able to hold her for a long while. OT came in while I was holding her and worked with her - to help her with the suck, swallow process. She took about 2 cc's, but more importantly she showed more interest in the bottle today. I asked about the mental (pain) association I talked about yesterday and she said that was true. It just takes time to work through it until they realize swallowing is not painful, and is actually rewarding (full tummy).

They doubled her feeds today. She's now receiving 4 cc's of breastmilk every hour. It's still on the pump that slowly pushes it through the tube.

We still haven't seem anyone from PT yet, but Ashleigh was doing her own workout today. She was moving her legs and arms around like it was saturday night.

They weened her respirations again this morning. She is now down to 30 breaths per minute. There was talk about 'possibly' moving her to an LTV (Lap Top Ventilator) late next week. The LTV is the ventilator that she will come home with. They will monitor her progress over the next week and see. The LTV can maintain the exact settings she is on now, it just doesn't give as much visual feedback.

Thank you all for your continued thoughts and prayers for Ashleigh. As you can imagine, I'm getting closer to dancing in the streets. Check out this photo from this morning. Take a deep breath and stop for a minute when you look at it. No matter what kind of day your having - good or bad - remember, each of you have done your part in making this smile possible ...thank you.



August 23, 2006 (evening)
Three months in the NICU and surgeries later = big six figures,
Ashleigh's smiles tonight = priceless.

August 23, 2006 (afternoon)
Today is weening day for her morphine. We're down to .8 ml/hour now. So far - so good. Her respirations and ventilator settings remain steady today. That's extremely hopeful. But that's a day by day emotional strategy, so you won't find me in the streets dancing and carrying on.

The immediate hurdle right now is food intake. Yesterday, they switched her over to receiving 2 cc's every hour continually, every hour - all day/night. She has spit up twice in the last 24 hours or so. There is a little concern there, but for now they are going to continue on feeding her to see if she can work through it all. OT tried a bottle today and yesterday. They said she did better today than yesterday, but still didn't show much interest.

She has shown some interest in a pacifier and sucks on it a little bit. Her nurse today said that was common, that babies there would suck on a pacifier, but not be intrigued by the bottle. One comment her nurse made really made me think about the differences between bottle and pacifier. With a pacifier, she gets nothing in her mouth. With a bottle, she gets milk - a liquid ...that has to be swallowed. Duh, right? But you have to remember she's had something shoved down her throat for weeks upon weeks. That tube in her throat rubbed and irritated her for all that time. So the 'suck, swallow, breathe' coordination that we all take for granted has been physically and mentally altered for her. She has to once again learn it (or at least practice it) and also get past any negative or painful mental associations she may have related to swallowing. That's my view on it all - so take it for what you feel it's worth.

So for those of you who have been in prayer for Ashleigh's healing, I'd like to add one more prayer to that list if I may - that she will be able to work past the physical and/or mental challenges she faces for eating, and that her body will be able to digest and use that food to make her grow - to be strong, wise and well spirited.

All this, one day at a time.

August 22, 2006 (evening)
Not much has changed since earlier this afternoon, which is a good thing in this case. She has remained stable for double-digit hours now.

It appears that she has her days and nights mixed up right now. Ashleigh's nurse tonight threatened (with humor) to remove her mirror from her bedside though if Ashleigh didn't go to sleep. I can't blame her, I'd be fascinated with myself too if I made it through all that she has.

Thank you all for your continued thoughts and prayers. They are extremely appreciated and important to us.

August 22, 2006 (afternoon)
Ashleigh has mostly been asleep this morning. Of course, she didn't go to sleep until 3 this morning. Her heart rate was elevated last night, we're thinking maybe because she was just fighting sleep. Her temperature and other vitals weren't out of range, so no signs of anything going on infection wise.

As planned yesterday, she was weened slightly on her respirations to 32. She has been doing really well overall (considering what she's been through) the last two days from a respiratory standpoint.

Occupational Therapy tried to feed her by bottle this morning. She was not interested. I was not there when they tried, so that's all the details I can offer. Since it was this morning, it could be she was more tired than hungry. A lot of babies that are intubated and on the ventilator for a long time have trouble sucking for a while though. Ashleigh has breastfed and bottlefed before she was intubated, so we're hoping over time she will begin to suckle again. One of the alternatives is a stomach tube. We would rather avoid that, eventually coming home with one tube (trach) sticking out of her is enough for me.

They have slightly increased her feed volume to 2cc's per hour. She was on 5cc's every 3 hours. She's getting that by a pump injecting it slowly into her og tube.

Physical therapy is going to start working with her to try and help her catch up on developmental skills and movement. I think this will help her tremendously, barring that she has the lung capacity for increased movement and activities.

Some days it's overwhelming for us to absorb all that happens in one day, other times we catch ourselves focused on three months down the path. We have to continually remind ourselves to take it one day at a time. It may take an eternity to reach our destination, but each forward step on the path builds upon the previous. There are no guarantees in life, but there is much reward in trying.

Please pray for physical healing, mental strength and emotional calmness for Ashleigh, and her mom, today.

August 21, 2006 (afternoon)
Shh... nobody tell Ashleigh, but they weened her morphine a little bit today. They also discontinued the antibiotics since nothing grew in the cultures and she has not been running fever.

She went through a period last night/early this morning where they were not feeding her because she was not fully digesting the previous feed. Her neonatologist started her back again though. His view is that her stomach is large enough now that having residual is not a big deal (as long as she's not spitting it all back up). She had six or seven thin stools yesterday (just what you wanted to know, right), but none today when I was there earlier. I guess she's ready for more. Balancing her intake with her stomach's ability to digest is tricky. She really still has only been eating again for about a week and that has been off an on with very small amounts. Her stomach and all the related muscles and enzymes have to get working again. Her neonatologist is all for trying to give her some type of probiotic which helps her digestion (and also supports her immune system), but said she needs to be getting a little larger volume before we can start doing that. When she begins to eat by bottle, I don't think that will be an issue. Right now though, she's only been getting 5 cc's and the tube is very narrow, so any solids introduced would likely clog the tube.

She is breathing well today. She seems to be pretty comfortable on the vent settings. They are still using the SIMV mode which gives her a baseline pressure and then lets her trigger a breath. When it senses her inhaling, it suppplies the breath. They also have a mandatory rate of breaths set. The vent triggers those, but if she takes a breath while it is in process, her breath overrides the ventilator breath. In other words, she is controlling the vent instead of the vent controlling her. And if for any reason, she quit breathing - the vent's 'got her back' ...well, okay, lungs. (I'll be here all week.)

She has been awake today a little more than yesterday. She has figured out that she can turn her head from side to side now. She doesn't have great muscle control yet so it's a little jerky, but it won't take her long. I anticipate she'll soon be following people around by turning her head as they go by. I guess we can say good-bye to what little hair was left on the sides of her head.

Maybe if no one tells her, she'll just keep getting better and coming of the medications. That's where my prayers are.

Thank you all for your continued thoughts and prayers.

August 20, 2006 (afternoon)
Ashleigh slept a lot yesterday and has been in and out today, mostly out. She has not been running a fever, though she stills bumps the ceiling of a normal temperature off and on. Her heart rate yesterday and today has mostly been back in the 150's and 160's, a very welcome change. It gets higher when she's being messed with or when she gets hot.

None of the cultures they took this past Friday morning have come back positive for anything as of yet. It's possible it is/was a virus, those do not show up through cultures. They are still giving her antibiotics for now. The initial blood test (on Friday) showed an elevated white blood cell count, so her body was ready to rumble, we just don't know with what.

Though she slept the entire time, her heart went up into the 180's, and her temperature went up, I was able to hold her today for a little while. You know, I've always had that affect on women. Uhm, the putting them to sleep part, not the feverish, escalated heart rate part. It was good to hold her again after so long.

We're hoping she will soon be able to start weening from the medications again. She only has versed and chloral hydrate when the nurses feel she is compromising her health or when they know they are about to hack her off, like when it's time to change out her trach ties or give her a bath. One day she will get to the point where she doesn't need medication to get through those any more. Her morphine is still at the same (drip) rate since after her trach surgery. We hate to see her start going through the fine line process of weening again, but she needs to get off the sedatives and get past the drug dependency at some point.

She is still feeding every three hours, but at a rate of 5cc's (one teaspoon) over 30 minutes. She seems to be doing pretty well with that amount so far. They reduced it from 10cc's because she threw up after two feedings. Her tummy has looked a little rounded to me over the past few days, but they keep checking it and it remains soft, so I don't know if that's because she is getting constant feeds (even though they are small) or because she has gas, or both, or something completely different. Time will tell.

Thank you all for your continued thoughts and prayers for Ashleigh's health. We all know we are still on a long journey. That this is not normal. That normal is being at home - together. Normal is not having dependency on a machine to breath or a tube inserted in your airway. But for Ashleigh, the NICU is the only home she has ever known. She's required breathing assistance for nearly every hour of her life. For her, tube feeds, needles, and bells have replaced breast feeds, big sister playing peek-a-boo, and dogs barking outside. She has missed out on so many of the 'normal' little things from birth until now. But what she has not missed out on, in fact has had an abundance of, is people caring for her, thinking of her, and praying for her. For that, I can only continue to say 'thank you'. Thank you for actively participating in this journey and helping to keep her with us, and eventually 'with us' at home.

August 18, 2006 (afternoon)
Ashleigh was given Tylenol® this morning to help her fever. It seems that it actually reduced her heart rate as well. I suppose it's possible that the Tylenol helped relieve her pain, which reduced her heart rate and helped her relax. She has other medications on board, but maybe Tylenol worked in this case. Pain management is not an area I pretend to have expereince in, so I might be convinced differently later.

At any rate, as of about 2:30 this afternoon, her heart rate had come down which certainly helps mine come down as well.

The initial results of the tests they did this morning show she does have some type of infection, so they have started antibiotics once again. The cultures take 24+ hours to show any growth, so we might know tomorrow exactly what we are dealing with. Her care team is leaning toward another urinary tract infection.

Hopefully, her heart rate will contiue to stay lowered, her pain will subside and by Monday she'll be back on track again. Thank you all for your continued thoughts and prayers for her health. I am extremely grateful for each one of your prayers.

August 18, 2006 (morning)
Early this morning, Ashleigh started running a high-grade fever. Her heart rate continues to be elevated and reached 220 this morning. They have done lab work to try and determine the cause. We are thankful that she has done something that allowed the hospital to react. Her elevated heart rate over the last several days just didn't give them much to work with, but I'm quite sure is involved with whatever the problem is. We are highly concerned for her, however. Any kind of infection in her fragile ecosystem of health is very dangerous. We don't know if it is infection for sure. I don't think that it is related to withdrawal symptoms, but it could be.

Her carbon dioxide has increased some in the last 24 hours, but is still not high enough to cause concern for her care team. It is not nearly as high as it has been in the past and we certainly don't want it to get there.

Please keep Ashleigh in your thoughts and prayers today.

August 17, 2006 (afternoon)
Her care team decided this morning it might be good to give her another dose of chloral hydrate. It seemed to work fairly well through the night and this morning she was agitated and had myoclonic-like muscle movements again. A larger concern to mom and I is that her heart rate has remained elevated (180-200), even with the chloral hydrate. The explanation could be exclusively due to withdrawals. Either way, that indirectly affects her respirations. They have not made any ventilation setting changes today so far, hopefully it can stay that way.

Now for the big and exciting news. Even with all that going on, Ashleigh's neonatolgist was encouraging us to hold her. (You know it didn't much 'encouragment'.) Michelle was scared to pieces. She does have the trach tubes, medications lines, wires, IV's and all that kind of stuff still attached to her. But all those fears were easily consumed by Michelle's desire to have Ashleigh in her arms again. It was sometime in early to mid June since we held her last. She was able to hold her for a little over thirty minutes. All I have to say about that is... I'm next. Maybe later this evening or tomorrow.

We don't know how long all this withdrawal stuff lasts. The answers are always "It varies." And I can appreciate that. There are a lot of variables involved with drug withdrawals, so I guess we'll need to just ride that part out and pray each day her body can recover from that as well. The most important thing right now (as our neonatologist reminded us) is that her lungs are doing well. She has been not only stable on the vent, but has lowered her assistance over the last several days. If she can remain steady on that path, she can make it past these withdrawals. As we all know, she is a tough little girl and I know many people are praying for her and thinking of her.

August 17, 2006 (morning)
They gave Ashleigh chloral hydrate last night to help her sleep. She has been able to tolerate her feeds through the night (by og tube) which is good because chloral hydrate can cause upset stomach and vomiting. She slept well through most of the night. She really needed that. I hate that it was (at least partially) medically induced, but am thankful that she was able to sleep well. She has required a little more oxygen overnight than she did yesterday during the day, but usually when she sleeps well - she does need a little more. Plus she had additional drugs on board that work as a sedative. We'll see how today goes. Hopefully her withdrwal symptoms will be minimized, it is tough watching her go through it. I can't imagine how tough it is for her to actually live through it.

As of this morning, Ashleigh weighs 3515 grams (7.75 lbs.). She has been consistently gaining a little weight every day over the past week.

One day at a time. Thank you all for your continued thoughts and prayers for Ashleigh.

August 16, 2006 (afternoon)
Well, we think we know why Ashleigh didn't sleep last night, ...and it wasn't the mirror. Drug withdrawals. She was running a slight fever this morning, had jerky muscle movement and an elevated heart rate. Her nurse this morning picked up on the symptoms (thank you) and so they have increased her morphine drip and also increased her methadone dosage. The morphine drip increase will help the immediate symptoms and the methadone will help them be able to reduce her morphine over time.

Her pulmonologist came by this morning as well as ENT and both were happy with her progress on both fronts, respiratory and the trach. Her neonatologist wants to begin letting her try to suck a bottle soon. They will start with very small amounts and feed the rest through the tube like they have been doing. That might happen as early as this afternoon/evening.

She has continued to do well with the current ventilator mode and settings. They weened her pressures back a little bit more since I posted this morning.

We are definitely encouraged by her respiratory improvements. Those are no doubt answered prayers. Please continue to pray that her remaining lungs would be perfect for her, that her airways will become strong enough to stand firm while she breathes, and that her body and mind will be able to quickly adjust to continually reducing volumes of medication.

August 16, 2006 (morning)
Over night, they were able to ween Ashleigh's mandatory breaths from 40 to 35 and her pressures slightly. She has also been on very low oxygen all night, and really for a good bit of yesterday too. So she is again doing better at managing her breaths and working well with the ventilator. Some of this may be delayed responses from the trach change. They mentioned yesterday because we were going to a different trach size (from pediatric to neonatal) that the ventilator might have to be adjusted slightly. No matter the reason, I was delighted to hear the pressure was able to decrease a little.

Her nurse for the night said she only slept for about an hour and a half.  By the recommendation of other nurses (thank you) in the unit, I found her a little small mirror (not glass - just to clarify) that attaches to her crib. She instantly loved it. While I was there last night, she was intently checking herself out. How beautiful is that? I sure hope that's not what kept her up all night. I'm sure little-miss-pris will get some sleep today.

She had one feed last night that she spit up some on. They skipped the feed after that one, but started back this morning at 6 am.

One day at a time. Thank you for continued prayers for Ashleigh's health, and encouragement for Michelle and I. Thank you all for caring enough to read this and for offering us encouragment during the highs and lows.

New photo posted.

August 15, 2006 (afternoon)
The update early this morning when we called was encouraging. She had been through the night without extra sedation. She receives morphine continuously, but they have been giving her two other medications to keep her calm, still and hopefully out of pain. When we got to the hospital this morning, the first thing I noticed was the rise and fall of her chest. From the standpoint of just looking at her inspirations and expirations, the difference between last night and this morning was dramatic. Her chest rises and falls this morning were the closest to normal I've seen in many days, if not weeks.

Though she has received extra doses of versed a few times today, she has been fairly alert and stable. ENT came in earlier this afternoon and changed out her trach for the first time. They said the stoma (hole that the trach goes into) looked very well formed. She did well through the change. Of course she got mad, but she did not desat through the procedure. She coughed some after, but that could be from them scoping to be sure the trach was positioned correctly. They used a neonatal trach this time, so she should be able to move around a little easier now.

They have increased her feeds again today. She seems to be doing well digesting so far. Each time, they check her tummy to be sure she has digested the previous feed, and she has been. She spit up a few times earlier this morning, but her neonatologist thought it would be best to just stay the course for now.

Over all a much better day so far than yesterday, and much better than last weekend. Each day at a time. Hopefully each one will get a little better.

Thank you all for the emails, encouragement and prayers. We really needed it over the last several days. Hopefully, her remaining lungs will continue to do well, her trach site will continue to heal, the trach itself will become a more 'natural' fit to her, and her tummy will continue to digest food and help her body strengthen her airways.

August 14, 2006 (afternoon)
Today was nearly the same as over the weekend. She is still very irritated. They are maintaining heavy sedation. They moved her to a completely different type of ventilator this afternoon. I have not been able to see her yet since then (life continues outside the hospital walls). They are also planning to swap out her trach tomorrow. They will use the neonatal trach tube this time. Her x-ray this morning showed her right lung well oxygenated (but not extended) and her lower left lobe partially oxygenated.

She continues to have small desaturation spells often where she desats and requires additional oxygen to bring her back up. To my knowledge they have not had to do more than turn her oxygen up to help her recover from these today.

Michelle and I met with her care team today. We wanted to be sure we understood not only where she is right now but our goals and plans for the next days, weeks and months. Honestly, some of the possibilities were not encouraging. Because we still don't have an understanding why the left lung became emphysemic, there is still concern by all involved that the right lung may do the same. Her right lung has been through an awful lot of trauma and has thus far held up. The anxiety of the unknown is tough, but I'm hopeful that the past is proof that it will continue to serve her little body well.

They are increasing her feeds a little more. This will obviously help her continue to grow. This is crucial to her developing strength and ultimately increasing the size and rigidity of her airways.

For all those keeping up with Ashleigh, I know reading some of these updates can often add more burden to your likely already stressed day. I hope that you will hold tight with us though, and continue to be with her in thought and prayer for her healing. I am reminded today to take it one day at a time.

August 13, 2006 (evening)
Ashleigh has not had a good weekend. Her health has trailed down since early Saturday morning. She is not as sick as she once was, but her actions certainly remind me of those days not so long ago. There are factors in play that her care team have yet to get a handle on. They changed the way the ventilator delivers breaths multiple times today in an effort to better meet her needs. It could be that she was over weened or it could be a myriad of other plausible reasons. The bottom line is that she is not recovering well. On Friday, the day after surgery, she was doing so well. Breathing really good - almost on her own. Yesterday, she was irritated and restless. Today, they kept her more heavily medicated in an effort to keep her from being so restless. She had two episodes today where she dropped her oxygen saturation, both required her to be bagged to be brought back up. I was there for the second episode. She declined unbelievably fast. Both of these may have been mechanical issues, since trachs do get clogged - in addition to the current trach being long in her airway - but no matter the cause, it is still difficult to experience.

Her x-rays are showing her right side as a little extended - from the additional pressures they have had to use to keep her ventilated. In the past, that right lobes of her lung adjusted after the pressures were reduced. Let us keep hope that they will do the same again.

All in all, it has been an extremely discouraging weekend for Michelle and I. We abruptly came off the high of her successful second lung surgery (July 28th) and tracheostomy (August 10th) that took place over the last few weeks. She's had issues in the midst of all that, but none that were directly respiratory related. That's what has hit us so hard. I guess in the back of our minds we were hoping we were through with that difficult part of the journey. But here we stand as the world keeps spinning - day, then night.

My prayer tonight. Father and Creator, in my life, at this moment, there is immeasurable emotion and spiritual turbulence. It is a time of inward pains and outward pressures, and an unknown dimension of unanswerable questions. I ask that I may put my full weight upon you. I have seen the darkest times of my life pass by, second by framed second, and within hours seen the brightest rays of hope dazzle me, but I am worn thin from the increasing gap between that darkness and light. I pray that you lend me your strength, your will, and your clarity. But more than anything for me, I pray for the healing and comfort that only you can deliver to Ashleigh. I pray that you give her mind repose from the drugs, anxiety and pain; that you would be diligent yet swift in healing her tender frame; and that her spirit be rejuvenated, so she may enjoy the innocence and child-like naivete robbed from her by frailty. Please Father, restore Ashleigh. This I pray. Amen.

August 13, 2006 (morning)
Ashleigh's day yesterday can be summed up in one word - restless. She was fussy, fidgety, and just kinda hacked-off. They gave her additional versed (anxiety medicine) yesterday to try to keep her calm/sedated/relaxed. It seemed like it helped some, but she was still irritated. There's probably no way to know for sure what the root of the problem was, but they did end up increasing her ventilator settings early this morning. It could be that her body was just getting tired and needed a rest.

Yesterday, they also did loosen the ties around her neck that hold the trach in place. These ties are not as soft as the ones normally used. The surgical ties are a little less comfortable but are required to keep the trach stationary - to heal and create a nice stoma for future trach changes. Once that initial trach is changed, then the softer ties are used. I have not seen the site that was rubbed from the trach (it's covered with gauze), but her Neonatologist said it looked better yesterday.

August 11, 2006 (evening)
Okay, before I get started, my blood pressure is back down now. Sorry, but life is life - I just gotta learn to deal with it.

So on with the important stuff. Ashleigh is doing really well regarding her ability to breath. They have weened her down to one of the lowest (if not the lowest) rates she has ever been on and the ventilator is providing just limited assistance outside of the EEP (end-expiratory pressure) - the air pressure that remains in her lungs between breaths.

They have changed the way the ventilator works again to support her renewed ability to facilitate natural breaths. It is now using SIMV (Synchronized Intermittent Mandatory Ventilation). With SIMV, the ventilator can handle breaths in three different ways: by her breathing spontaneously, by the ventilator synchronizing with her breath or by the ventilator giving a mandatory breath. The mandatory breaths are what they continue to lower if I understand it all correctly. They are able to do this because she is making such successful efforts to have "spontaneous" breaths.

The big deal with SIMV is that it allows her to pull air in and expel air like our lungs were designed to do. Under other settings she has been on in the past, the ventilator pushes air in on 'inhalation' using positive pressure. For our natural breaths, when our diaphragm contracts, it flattens and increases the size of the chest cavity. That contraction creates a vacuum, pulling air into the lungs. Negative pressure versus positive pressure to get air in.

Guess I got a little carried away with the explanation, but it is all fascinating to me. Just take a minute and conciously think about what's going on inside as you breath. Talk about taking stuff for granted.

It may be a long road to know exactly where we will end up regarding her longer term respiratory needs, but for now we are very encouraged that everyone's thoughts and prayers for little Ashleigh are being answered so clearly. Thank you all for the cards, emails, posts, and most importantly ...your continued prayers.

August 11, 2006 (afternoon)
This morning we walked into the NICU to find six people around Ashleigh's bed. Because of the positioning of her body (to keep the trach positioned right), part of the trach had rubbed her skin just below the incision. So they were all in there taking a look and trying to figure out the best way to let it heal without major changes. For now they have inserted a piece of saline soaked gauze between the aggravated skin and the trach, and repositioned her to be more flat. The ENT surgeon that did the surgery is supposed to come and look at it this afternoon. They may have to take the trach out and put an ET tube (like what was in her mouth) in its place for the site to heal. The tube would be in the incision on her neck, not in her mouth. The negative about that solution - since there is no way to hold it in place - they have to literally stitch it to her chest. Sounds like a fairly prehistoric solution for the year 2006, but nothing is as perfect as we would like it to be and it would, after all, take all the weight and pressure off the incision.

As far as her breathing and lungs go, everything is working well. They have been able to ween her respirations down substantially from yesterday after surgery. She is now breathing again on her own (above the ventilator) and she is doing a nice job of getting her air in an out. Their goal is to continue to let her do the work of inhaling and exhaling - and just letting the ventilator supply that air along with the base pressure she needs to keep her airways open.

My soapbox: The whole trach to ventilator attachment design is ridiculously poor in the first place. When all assembled it weighs far to much, the pieces are to big for an infant neck (so that it rubs the skin in multiple locations) and the pieces between the trach and the ventilator tubes come apart to easy. The way it is designed, it puts all the weight of the attachment straight down on the neck of the infant (first poor choice), and worse, on the incision itself (second poor choice). It makes me want to design a better system just to shake up the market. Whomever developed that system needs some initiative to innovate, it has room for improvement. Okay, sorry - I'm off my soap box now and I'll let you know when my blood pressure recedes.

August 10, 2006 (evening)
They are keeping Ashleigh fairly sedated this evening. She is stable, but they want to be sure she is not in pain and also be sure she doesn't get too active while the cut around around her trach begin to seal/heal. She was a little puffy tonight but nothing close to how swollen she was from the first or second surgery. They are having to keep her head tilted down (chin near chest) a little bit, the trach they used in surgery is a pediatric trach tube and ended up being a little too long in her trachea according to x-ray. It's not harming anything, they just want to be sure it doesn't. Once this trach is in for about a week, they'll remove it and use a neonatal trach. By definition, she's not a neonate (first month after birth), but I guess size-wise she still is.

I posted two more photos this evening. One the day before surgery (with a big smile) and another one from earlier today, after her surgery (no smiles yet).

August 10, 2006 (afternoon)
Ashleigh went into surgery at about 1:30 this afternoon. By 2:15, they were done. She did well through the entire surgery. We were able to ride the elevator back up with her and see her lips and face again for the first time in well over a month. She looked beautiful without the tape and tube. She was still sedated and paralyzed at that point but she looked good. Her color was good and vitals were good. I think they will let her come off both the sedation and paralytic today. We hope this will be the last surgery. Our hope is that she will recover well and maybe have a few smiles for us tomorrow or the next day. We'll be able to see them better this time. Thank you all for your continued prayers.

August 10, 2006 (morning)
I just received a call that Ashleigh's ENT surgeon had a cancellation today. Ashleigh will have her tracheostomy done this afternoon, sometime after 12:30. Please keep her in your thoughts and prayers today. I'll post as soon as I can after the surgery.


August 9, 2006 (afternoon)
When you get to the hospital and eventually head down the last hall before getting to the NICU, you just never know what to expect. Is she doing better, the same, or has something come up since the last update? Today was a nice change. After being there for a few moments this morning, she woke up. I started talking to her and she responded by smiling back. I know I'm suppposed to be "a man" and all, but when I look into the eyes of an infant that has been so sick and come so close to death so many times - and she smiles back at me - well I couldn't help but get all twisted up inside. But to redeem my manlihood (and for all you fellow men reading this), I didn't start leaking (crying) - I held my composure. It was very nice - whether I get ragged about being sappy or not.

After meeting with Ashleigh's care team this morning and waiting on a few return phone calls, the plan is for Ashleigh to have her tracheostomy on Monday. Her ENT doctor will not be able to do it before then. Unless something new develops with her bleeding issue from a few days ago, we are not going to do the endoscopy. They are going to try and feed her today - 5 cc's of breastmilk every 3 hours. Her right lung is still looking good according to x-ray. We hope her airways will strengthen quickly so we won't need the trach for long.

She's had two spit-ups with bloody stomach liquid in them over the last 12 hours, but both were dark, so no new blood. I guess it will take a little time to get all the old blood from her tummy.

Thank you all for your continued thoughts and prayers.

August 8, 2006 (night)
After a day of fluid plans on what is needed and when it is needed, we are down to having a tracheostomy done on Thursday or Friday. The endoscopy (scope to look at esophagus, tummy, and small intestine) I mentioned earlier today will either be done just prior to the trach surgery or not done at all. There is debate whether it is needed at this point because her bleeding seems to have receded and anything out has been dark blood, meaning it has been sitting in the belly for a while.

Hopefully it will be a good (and quiet) night for Ashleigh.

August 8, 2006 (noon)
Ashleigh had a decent night. Her heart rate was elevated last night for a good while (over 200). They were not sure why, but her hematocrit (measures the proportion of blood volume occupied by the red blood cells) was low. She lost a significant amount of blood from the bleeding in her stomach (or maybe intestines - I'm not sure of the source). When a person's hematocrit measure is low, the heart has to pump harder (faster in a baby's case) to make-up for the 'inefficiency' of the blood. They went ahead and ordered another blood transfusion for her today. If that was the reason, that will help.

One of the tests for infection they did yesterday came back negative. For a while yesterday, we were bluelined. "Bluelined" is my term for when the NICU determines that everyone in contact with the baby must wear a gown and gloves. It is generally done when there is any chance that the child has something communicable. I call it bluelined because they put a piece of blue tape on the floor in front of the bed space. That tells everyone (along with a bright orange sign on the bed) that they have to gown and glove up. At any rate, once that test came back negative, they removed the blueline.

Her tracheostomy surgery might be this Friday. They did talk about doing a scope into her tummy to see if they could determine the cause and status of bleeding. I have not heard anything definite about that yet. They may possibly try to start feeding her breast milk again tomorrow, based on how things go today. They will still feed her by OG tube (tube in the mouth or nose that goes down to her tummy) and it will be a very small amount again.

Over the last two days, even through all the bloody stools and dark red liquid from her stomach, she has been acting more like a baby. She looks around. When she is awake, she wants to see everything. And even though her mouth and cheeks are covered by tape, she gives us a big smile every now and then. Just one of those smiles is worth twenty times the measure of fear and anxiety that has engulfed us through this experience. A few more of those smiles, and we won't even remember how difficult this journey has been.

Thank you all for everything you have done. I know I write this every time, but thank you for your continued thoughts and prayers for Ashleigh. She has endured so much more than most people endure in a lifetime. There are many reasons why she is still here with us, one major one being the support, prayers and love she receives from each one of you. How can a father thank everyone for that? I have not found a way. All I can do is to continually tell you how grateful I am that you all care enough to take time away from your day to pray for her, to think about her, to post prayers, ideas and encouragment, to read the updates here... I know that it is not sufficient, but I hope it is warmly accepted.

August 7, 2006 (noon)
Ashleigh's care team has taken no chances with her bleeding. Lots of tests. We are still waiting on results for virus type stuff, but they have gone ahead and started back on two anitbiotics to take care of bacteria related illnesses. They also switched the medicine that she gets (for her stomach) to previcid, which is supposed to help stop bleeding. Her neonatologist believes she has an ulcer, possibly brought on by bodily stress. She has certainly had a little bit of that.

Some of the tests will take 24-48 hours to get final results on (cultures). At the moment, she still has blood in her stomach and stool, but it is darker, which means it has had time to digest and the source is slowing. She still doesn't show any signs of outward distress. Her surgery has been put off for today. Once they get the intestinal issues cleared up, they will reschedule. We were able to see chest and abdominal x-rays this morning. The chest x-rays are encouraging. Her lower left lobe is beginning to process a little more air. Her right side looks good. It is encouraging because they have actually lowered her ventilator settings over the last few days.

Thank you all for your continued prayers. Michelle and I are off to find some caffeine.

August 7, 2006 (early morning)
Everything seemed to be generally stable with Ashleigh over the weekend until last night. She had blood in her stomach and vomited twice. The first appeared to be old blood (described as looking like coffee grinds), the second (later this morning) was bright red. In between vomits, she passed bright red blood in her stool. At the moment, they have done multiple tests (labs) to try and determine if it is infection or something else. Her white and red blood cell count are normal, temperature is normal, her heart rate has not fluctuated (mid 150's), and her respirations have not changed - she's still on the same ventilator settings. They are waiting on a test that shows her bodies ability to coagulate; from what I've read so far, this can help determine the cause and severity of treatment. An initial x-ray shows a suspicious area in her abdomen, but inconclusive to any diagnosis. They plan to repeat an x-ray later this morning to see if anything changes.

She was on the waiting list for having a tracheostomy today. My guess is they will want to be sure this is not an infection, virus or anything else that could labor or compromise her immune system before making a decision whether to hold off or not.

As of now, we don't know what all this means. It could be something as simple as an abrasion in her stomach to something much, much more serious.

I know there are many people that keep Ashleigh in their hearts and prayers each today. I humbly ask that you continue to pray for her health, specifically for her airways to grow and become rigid and for this new concern of bleeding.

August 4, 2006 (afternoon)
It's been one of those 'nights and days' that reminds us that Ashleigh is still sick. I just got finished saying yesterday that Michelle and I were "guarding our emotions". Yeah right. We thought we were. Ever run a long distance race and think you're in first place - turns out you're in last place - that gut wrenching feeling you get of frustration, embarrasment and nausia at the same time? Yeah, that's what we were feeling last night. It may have turned out to be not that big of a deal, but the fact is we thought we were guarding our emotions and we just nearly got sick from even thinking she was sliding backwards. Ashleigh's nurse last night noticed she was running a fever and her respirations were really high. (To be fair to Ashleigh, they had bathed her, dressed her and changed the bed she was in earlier that day - so I'm sure she was not in a mood to be messed with.) They went ahead and drew blood and urine samples to start testing for infection. They also immediately started her back on two antibiotics. Her white blood count was a little elevated, but not too far off. It could be remnants of the UTI coming back or it could be that we were not over-reacting and it's something serious. The cultures take a while to grow out any bacteria that exists in her blood or urine, but she is on antibiotics in the mean time. All that to say we were fooling ourselves. You cannot hold your emotions that tightly when good things are happening.

Ashleigh's pulmonologist did the bronchoscopy this morning. We have not been able to catch up with him yet, but from the meeting this morning with her care team, she is suffering from malacia in her airways below her trachea. That means she will need to have a trach and will be on some sort of mechanical means to maintain constant pressure in her lungs. We don't have all the details yet, but that looks like the path we will need to take. A little disappointing, but nothing we had not already discussed. No new variables is a beautiful thing in the medical profession.

She has been gagging on her vent tube a good bit today. They are lowering her medications so I'm not sure if that is the complete reason, or if it may be several layers deep. She will gag, then turn dark red, then curl her back, then spit up. It's hard to watch that process, especially when there is absolutely nothing you can do except clean up the spit up.

They also started very light feeds today. This may be another factor in her spitting up. See what I'm saying about the 'new variable' thing? As things are introduced and weened, new reactions occur and it's near impossible (for me anyway) to figure out why the new reaction is occuring.

At any rate, she's still doing well considering where she was late last week, but the slightest changes make monumental differences - apparently not only for Ashleigh, but for her  mom and dad too.

August 3, 2006 (afternoon)
Once Ashleigh decided to sleep, she slept well, through most of the night.

Yesterday afternoon, they switched the way her ventilator works. Before, the ventilator settings were based on the length of the breathe and the pressures. Now it's based more on the volume of air in each breathe. So instead of  a specific 'time' for each breathe, once she receives a specific 'volume' of air, it completes the breathe. That volume of air is called tidal volume, or TV. They were able to ween the pressures on the ventilator today again after that change yesterday. The ventilator is currently giving her around 34 breathes per minute and she is breathing mostly room air (the same air we all breathe - no additional oxygen).

Tomorrow morning her pulmonolgist will do another bronchoscopy (travel down her airway using a very narrow tube with a camera at the end of it) with her vent tube still in. He wants to see if there are signs of malacia in her remaining airways. If he determines her airways are still collapsing, they will very likely want to go forward with a tracheostomy (plus ventilation), which will deliver pressure to her airways - only through the trach, not through the tube in her mouth. If he determines her airways are more rigid and not collapsing, they will attempt to extubate her (remove the ventilation tube and take her off the ventilator) at some point in the future. The timing on this is partially dependant to her dosage of medication/sedation. This procedure is not as invasive as surgery by any means, but can cause a significant amount of irritation to her tissue. They will have to sedate her for the bronchoscopy.

Tomorrow morning is another major fork in the road on her path of healing and recovery. Of course, we would like to eventually bring her home without a trach and ventilator, and that is what we will pray for, but either way - we are gleaming that she is doing well enough to be talking about these two paths.

I don't mean to understate where her health is. She is still in the intensive care unit. She is still sick. Part of her lung was removed just a week ago today. She is not eating. She is still on medications to help reduce her pain. I hope that everyone will know that Michelle and I aren't ignoring these facts. We are still very cautious about our emotions, but she has continued to make progress - and we can't (and don't want to) ignore those emotions either.

We are so thankful for continued prayers. She still has a journey ahead.

August 2, 2006 (afternoon)
I thought everyone might want to know, Ashleigh finally did decide that she needed to get some sleep. She's been sleeping a good since earlier this morning. Days and nights are pretty hard to keep straight in a hospital, so I can't blame her.

Her chest tube was removed today. They also clamped her OG tube to see if she can digest (and process) secretions in her tummy. If she handles that okay today, they will probably start to feed her tomorrow. It will be very small amounts over time. Last time they started feeding her it was two cc's over an hour or two. (Five cc's is a teaspoon.) That will help her body get used to accepting and processing breast milk again.

They have been able to reduce the number of breathes the ventilator gives her today. This means her lungs are working more efficiently (or the vent tube is just right - or both). Either way, that is a positive step. She has also been able to come down on the oxygen concentrate in her breathes, another positive sign.

This is all very promising news. I hope that each of you can enjoy her progress and feel as overwhelmed by it all as I am. Thank you for thinking about us and praying for Ashleigh.

August 2, 2006 (morning)
I have to take full responsibility for Ashleigh's actions over the last 24 hours. She seems to take after me in at least one way (over the past 24 hours anyway) - she won't sleep! She has only taken little naps off and on. And unfortunately, when she has gone to sleep it's time for an x-ray or something. I'm not sure what to read into it, is she feeling better, uncomfortable, something else - I don't know.  I think she'll probably sleep today though. If she really does take after me, my crash point is not much more than that - so she should be snoozing soon.

Last night she was more alert. One of her nurses hung little stuffed animal butterflies from the top of her crib several nights ago. She likes to examine them, but is showing signs of wanting to move her head around to see everything else too. (Okay, that she gets from her mom - a tad on the nosey curious side.) She can't right now because of the vent tube and all it's external pieces, but she was certainly getting her eyes turned in every direction possible to look around.

She is still very active, I might even go as far as to say borderline fidgety. Her heart rate and saturation is okay while she's wiggling - she's not comprimising her health from that perspective. It would be nice to know for sure why she is so active though. Whatever the reason, maybe it's related to her sleep pattern.

They took her off one more antibiotic last night and are planning on starting to slowly ween her pain and anxiety medications. Her new neonatologist said it looked like to him she was ready to be extubated. Everybody that was there at the time, and had been there last time they tried extubating her, tensed up - including mom and dad. That event is still pretty fresh in everyone's mind. She is a much different baby now, but we're still not sure how much of a role the ventilator pressures are playing in keeping her progress steady. I do trust his judgement and feel sure he would not try extubation until he sees signs that she might succeed.

My personal take on it is that I'd like to see what pathology finds from studying the other lung and the airways that were removed. That was discussed yesterday, so it may very well be that's what her care team is waiting on too. There are concerns that the cartilage her airways are made off are still quite flexible and soft (bronchomalacia). If this is the case, the ventilator pressure is what is keeping her airways open. If they are not, then taking her off the ventilator 'should' be easier.

Several people on her care team have made comments about how much better she looks and acts. I agree. She has certainly shown us over the last few months how much the body can tolerate and over the past few days how much the body can be healed.

Please continue to keep her in your thoughts and prayers. My hope and prayer is that she will continue to heal, that her remaining lungs will be perfect for her body's needs and that her airways will be rigid enough to remain open as she breathes each treasured little breath.

I posted a few more photos this morning too (at the top of the page).

August 1, 2006 (morning)
It's shift change for Ashleigh's primary neonatologist today (new month). I will be curious as to how much (or little) her roadmap changes. I don't have a concern over any of the physician's abilities - but every doctor does things a little different. So I would expect some change in the style of approach.

Last night when we were visiting, she had her eyes open and was looking around. Her body has been so swollen over the past few days that she was not physically able to open her eyes. Her swelling continues to decrease - she has been urinating... (all kinds of examples just came to mind) let's just say she has been urinating a whole lot. She still gets an upset look on her face and turns red often when she is awake, but she is not dropping her sats by much in the process - a positive and welcome change. She really likes looking at big sister. Of course, big sister always has a little stuffed animal of some sort at her side, so I'm sure the combination of those two factors is irresistible to the eyes of a two month old.

Her night (last night) was good. She continues to prove that she is 'so over' the pavulon (paralytic), and I hope it stays that way. She may have one more surgery to go based on the long term scope - which would be a tracheostomy - but maybe she can make it through that one without pavulon. I remember when Michelle and I were first presented with the possibility of her having a trach. We were so scared and freaked out, and still are in some ways. But in some other ways (our reality has been altered) it doesn't make us jitter inside thinking about it. We still hope she can come home without one, but that decision will come later.

The surgeons are planning on removing her chest tube (that drains fluid from surgery) today - if nothing changes.

Her x-ray early this morning showed her right lung still doing well and being less extended. Her left lower lobe is still not active and only has a small amount of air in it.

Some people have said to us, "I don't know how you and Michelle are still holding it together." It is only because of the support and help we have received from everyone reading this. From prayers, encouraging emails, cards, and thoughtful posts to the site - those are the reasons. We continue to be so humbled that so many people are thinking about, and praying for, little Ashleigh.

The only thing Michelle and I have been able to do in this process is to continue to believe in Ashleigh, pray for her, love her, be her advocate and lean heavily on the prayers and thoughts that have been extended to us. I prayed this morning that we are standing on solid ground with Ashleigh's progress. That we will not have the bottom fall out from under us. Understanding that her recovery and health may not be perfect, that she will have peaks and valleys. I'm hopeful though that the ride through those ups and downs will be a little less breathtaking. The last few days she has made significant progress. Still a long way to go, but we are slowly backing away from the edge of the cliff.

Thank you for your continued prayers, not only for Ashleigh, but also for all the other kids at the hospital. I cannot comprehend why such young children face the obstacles they do. And even though modern medicine is not perfect, it plays a significant role in the reality of why so many of the children are still here with their families.

I have learned to not take things for granted, there is no way to know what the next hour will bring.