October 2006

October 31, 2006 (afternoon)
The x-ray, we were told, looks pretty close to what the last one looked like. The right side is enlarged and pushing over into the left side. It does not appear to be affecting much her from a respiratory 'big picture'.  Stability is good. Not affecting her breathing is good. We'll take it.

This morning her speech therapist worked with her again on playing with cereal. She did very good again this morning, and seemed to not dribble as much.

She is figuring out a little more better how to get air past her vocal chords and is making an "ah" sound when she gets excited. Her speech therapist said to repeat any sounds she makes. Ashleigh thinks that's pretty funny when we repeat her sounds, but I'm still out on who is rewarded more - Ashleigh or her parents. It's a beautiful thing to hear her voice, even if just a little 'ah.'

PT got her a little pink kitty cat costume to wear. (Thank you PT.) We didn't keep it on her for very long because it was so thick (hot), but we got some pictures. Mom took the camera with her so I'll have to get them on the site in the next few days.

We were even able to go to the lobby with Ashleigh today. Yes, I'll repeat that. We were even able to go to the lobby with Ashleigh today. It sounds like not a big deal, but getting out of her room is a big deal. They had costume contests and trick or treating going on down there. That was the first time she's been around a bunch of people. We kind of kept our distance, but it was really nice to let her experience it for a little bit. She just looked around and took it all in. I don't think her expression changed one time the whole time we were out of her room. It was like she was in the 'absorb everything' mode. The big space with people moving around, the sounds of talking and laughing and room chatter, the light inside and outside, the colors and shapes, the trees and sky outside, she was clearly processing it all and ear marking it for later.

She's getting her shots this evening. They are using a deadening cream to help reduce the pain, but I'm thinking that crap has to hurt no matter. Sorry, my opinion. Can you tell I'm a little sour on immunizations? I know, there are arguments for and against, stories of saving lives and others of horrific results. It's as debatable as any other topic.

As I mentioned this morning, she gained a good amount of weight. Her pulmonologist said she had averaged about 26 grams (30 grams is an ounce) a day over the last 10 days. That is good weight gain. Nine pounds is 4082 and she is 4055. I'm hoping she breaks the nine pound mark tonight.

Thank you for continued prayers. No matter where we are in the process, knowing that people are keeping little Ashleigh in thought and prayer is comforting and something we can hold on to.

October 31, 2006 (morning)
Ashleigh broke the 4000 gram mark! She is now 4055 grams, or 8.94 pounds.

Should find out about the x-ray later today.

October 30, 2006 (afternoon)
Sorry for the lack of updates. Life came at me fast this weekend.

Over the weekend, her second bottom tooth broke through. We tried getting photos, but they ended up looking like something from late night National Geographic channel.

They did not do an x-ray today because they did one on Friday (primarily to check her line placement). They plan to do one tomorrow. Her blood gas this morning was in the ranges of normal. A little higher than the last time, but still within normal range.

She's been in a fairly decent mood overall, some times more playful than other times. Friday night she was in an awesome mood. She was playing and interacting and having a good time. It was very nice to experience and be a part of.

Today, she's been making more sounds. Not sure if she's just figuring out how to get air through, figuring out what to do with that air or if that's an indication of something different internally. She was in a pretty good mood today, so I think she's just figuring out she can make sounds and experimenting.

Speech therapy worked with her today giving her cereal. She did well. She's not doing this to eat - yet. We're dealing with very, very small amounts, but it helps her get used to the texture and taste. We dipped it on her passy first and let her taste it that way, then tried a little in a spoon. She pretty much just acted like a normal baby to me. Some of it staying in, some of it drooling out. Her speech therapist said that baby's tongues move food forward, so that's why they end of drooling some out. As we get older, I guess we figure out to move our tongues back or keep our lips shut - one of the two. Then, when we get even older, I guess we forget again. Interesting observation.

PT also worked with her today. She's doing good with following things around with her head and eyes. She's trying to turn over on her side, but she's got a little way to go. They started helping her put weight on her arms today too. They sat her up and leaned her over a little and held her elbow straight and let her lean in that direction. She looked like she was a year old sitting like that.

The infamous 4-month shots did not happen today (so far). They are going to spread them out over two days and three injections. I think she will end up getting the first two tomorrow. Everyone says you have to get them, including the state and federal government, but that doesn't mean I have to be happy about it. I am not looking forward to it, but delaying them only delays it. She still has to get them ...at some point. I guess it mind as well be now. Sigh.

She gained good weight Friday night, but has pretty much stayed level since then. She's just under 4000 grams (4 kilograms). That's still just shy of 9 pounds. The pulmonologist threatened to weigh her with a dirty diaper tonight.

Her bottom got really bad looking over the weekend again (Saturday), but is looking better today. It's like everytime we get close to getting her rear end healed, it breaks down again. We've asked a million and one questions on whether it might be something she is getting (in her food, medicines, etc.), her teething, etc. - so who knows what the cause (or causes) are. I hope we can get it healed for good soon though.

I know I haven't updated all weekend. I appreciate everyone being patient and checking back. We've got a lot going on right now, so I'm trying to keep all the plates spinning. You all know I am humbly grateful for the continued prayers for Ashleigh's healing though. Very grateful.

October 27, 2006 (afternoon)
An x-ray was taken today to check the placement of the TP line. It's where it's supposed to be. We're going to give the meds slow and see if that eliminates (or sharply decreases) the throw-ups. If not, I'm not sure having the TP in place is doing a whole lot of good. We'll have to wait at least a few more days to see. She did gain weight last night. She lost weight the night before, so she's up just by a few grams from where she was two nights ago.

Her practictioner said the x-ray (that they took to check the TP line) showed her lungs too. They looked about the same as the x-rays earlier this week from when they did the flouroscopy.

Ashleigh's mood today was more subdued. She wasn't in quite as good of a mood as yesterday. She's still alert and engaged by what's going on around her, but less theatrical. Over the last two days she's picked up a fascination with jewelry. She probably would have before, but we were having to gown and glove. Probably didn't mention they lifted the contact restriction - wasn't important this week comparitively. It's nice to not have to glove (to me, it's easier to keep your hands clean using the sanitizer anyway), the gowning part is not bad except that it gets hot. But I digress. She likes looking at watches and rings.

Big news today! Her first tooth came through. It's station "P". It's just barely through the surface, but it's there. Of course, her mom discovered that. She always notices the little 'details' like that (sarcasm implied). We'll try to get a picture when it pops up a little more. It's kinda hard to see right now.

Thanks for all the encouragement everyone has given through posts, emails and conversations. We really needed it this week. And of course, thank you each for your continued prayers. There's not a week (really, ...minute) that goes by where those aren't appreciated.

Photos added.

October 26, 2006 (evening)
I have to say Ashleigh was more like Ashleigh today. She was more engaging and excited about things going on around her. I'd say her sleep went from one extreme to the other, her naps were shorter today but were also more spread out. I guess she got enough rest over the last two days. The x-ray from when they did the flouroscopy yesterday for her feeding tube showed her right lung still extended over into her left chest cavity, but not as much and also it did not appear to be quite as dark (which means less air in the lung). Her lower left lobe appeared to be about the same density as her right.

They plan to wait until Monday (morning) to do another x-ray and blood gas.

They went up on her feeds to 29 from 28 (ml/hr) earlier this afternoon. She threw up again tonight, but I'm 99% sure I found the culprit - at least for tonight. Her antibiotic (macrodantin). They were thinking that because she had the TP line (into her intestine) that they would not have to give it to her over time. Apparently, that medicine absorbs quickly or reacts to her body (or something!) and causes her to be nauseous. We had to do trach care again tonight, not fun. It could have been something else, but I 'm leaning towards the antibiotic. Last night, she threw up about 4 hours after her meds, so that one is a little more difficult to piece together. It's not milk that she's throwing up, it's purely stomach content, so we still feel like the tube is placed properly.

Michelle and I are in a better frame of mind than we were on Monday and Tuesday of this week. I keep having to remind myself to take it a day at a time. An hour at a time if I need to. It's so easy to get ahead of yourself. I have to keep retraining my brain to be patient, optimistic and faithful. It depends on the day as to how hard each of those is to accomplish, but over all it's getting harder for all three.

I don't know where we will end up. Deep down, I really do believe she will come home. I beleive that. I hope she has many more days like today (except without the throwing up part). One day at a time. I guess we've got sunrises and sunsets for a reason.

October 26, 2006 (morning)
Ashleigh has overall been sleeping more and less playful to me. She still smiles and gets excited, but not as often and not as vividly. She is even more beautiful though.

We did meet yesterday with two of the pulmonologists, a social worker and a practictioner. It now seems like an eternity ago. The general consensus is that the pulmonary team feels like they have the experience and expertise to treat Ashleigh as her health changes. They also would refer her to another hospital if at any point in time, they or us, felt it necessary. The opinions of the two pulmonologists in the meeting regarding Ashleigh's long term outcome is one of uncertainty. They feel like it is too early to tell. They both strongly agreed that her weight is a major issue in her body's ability to aid in the healing process.

We also talked with Ashleigh's nutritionist yesterday. If you look at the growth chart she is far below the range of weight and height - though the two are increasing proportionately. She weighs a little over 8 and a half pounds right now. Just to get back in the ranges of normalcy, she should weigh more like 12 to 13 pounds. 14 to 15 pounds would put her more in the middle of the average.

We made the decision to move her feeding tube down into her intestines (transpyloric). Supposedly, this gives them the ability to increase her feeds a little more (more volume) without increasing the concern of throwing up and aspirating it. Though since this was done, she has spit up 4 times. Someone is going to have to explain that today. She lost weight last night for the first time in four nights.

They want to give Ashleigh her four month shots on Monday, October 30. Not looking forward to that.

Thank you for continuing to pray for rapid healing, growth and development.

October 24, 2006 (afternoon)
Day 141. The last 24 plus hours have been really tough.

Her x-ray yesterday morning showed her right lung expanded back over into her left chest cavity again. Several x-rays and vent increases later and I don't know that we've made much progress. They feel more confident this time that she did/does have some air trapping taking place in her right lung. The pulmonologist on this month is starting to use phrases like "not sure" and "we'll have to see." I am very weathered on uncertainty.

The pulmonologist on this month says they will be watching three things: how she is doing (personality and developmentally), her level of support (if it changes and if so, how much), and her growth (weight gain).

We have a meeting tomorrow to discuss where we are and where we are perceived to be going.

This past week forces me to challenge my faith, challenge who I am, and question my Creator's actions. Why does the life of innocence face so much trouble, pain and uncertainty? As with many other happenings on this earth, there is no way to quantify it. Even still, I have not, and will not, give up on Ashleigh. My role as her father and provider will not waiver no matter how weary I become. I humbly ask that we all continue to pray for her body to grow, for her lungs to heal, ...for her body to function perfectly.

I believe faith is far more precious to us when it is slipping from our grip.

October 22, 2006 (evening)
Yesterday morning they went ahead and went back up on the last change they made - pressure support back to 9 (from 7). It took her almost all day Saturday to sort of catch up, but she seemed to be better (breathing wise) today. She's still working some, but nothing like she was on Friday. She gained weight last night also. You don't know until you try, but I credit the pulmonologist on this month for not waiting longer. It was evident the change was not helping her - breath or gain weight.

They did also go up on her volume from 26 ml/hr to 27 ml/hr. The plan is to increase it every few days until we get to 30 ml/hr. Her dietician feels like that will be maxing her out based on her current weight. They really want her to gain weight. To her care team, that appears to be the main obstacle keeping her from coming further down on (or even off) the ventilator.

Since they went back up on her vent settings, it appears her nap patterns have changed back. Her naps today have been back over 30 minutes and she only took two.

It looks like her two front middle lower teeth (stations "O" and "P" using the Universal Numbering System) are just below the surface, but she hasn't shown signs of much discomfort today. We'll see where they go from there - it may take a while for them to actually come through.

Her bottom is looking better. Still the red spots where the skin is healing, but it is certainly on the healing side finally.

They have an x-ray and a renal panel scheduled for tomorrow morning. We're holding our breath on how her lung looks. It's been almost a week since the last x-ray.

Thanks for all your continued prayers for Ashleigh's health and growth.

October 21, 2006 (morning)
Not real sure how Ashleigh's body is going to handle all the weans made in the last week or so. Her blood gas yesterday was really good (almost too low), CO² was 31, pH was 7.4. Those are good numbers, but man is she working hard to get there. She's burning a lot of energy just to breath. A good indication of that is that she's lost weight the last two nights and she has been a little less "playful". Still smiling for the most part, but not as comfortable looking. We don't want to go backwards on vent settings but if that continues, or if she just flat bottoms out from exhaustion, something obviously is going to need to happen. I think the pulmonologist's answer to her losing weight is more volume or higher calories. Maybe that will work, I don't know for sure. She's going to have a limit to her volume before she starts spitting up, and if we get to that point, that will certainly not be a solution.

Her daily sleep patterns have changed over the last few days too, as I mentioned in the last post. Not sure if that's related to anything - just something I've noticed. Her naps have never been real long, but she's taking 20 minute naps (give or take) more frequently. It doesn't seem like she ever quite gets over being tired. I have theories, but I'll let it play out and see. It could be related to so many different things.

Her bottom is getting better. There are still some very red and tender spots, but it certainly looks better than it did on Thursday.

Her teething is still in the works. She does not like the taste of the OraJel (don't blame her), but after a minute or two it seems to make a big difference when she starts hurting.

I have been really tired this week, and realized yesterday it has clouded my optimism (go figure) and really taken a hit on my attitude. I've been grumpy and not very patient. Some weeks are better than others, what can I say. Now that I've had my ephinany (joke), may be I can work at it.

Thank you for continued thoughts and prayers for Ashleigh's healing. My prayer is that her body will be able to grow and compensate for the ventilator weans so that she can continue to gain weight and save the uncomfortableness for regular baby stuff  like teething and sore bottoms, not breathing.

October 19, 2006 (afternoon)
So they made another wean today on her pressure support. She was working harder to breath, but not labored so much that it appeared to bother her. She was still smiling and playing. She was wearing out easy though. She took a few 15-30 minutes naps and was up again. Her pressure support is now down to 3, for a total of 7 (add PEEP of 4). We'll have to see whether this wean is too much or if she has enough reserve to make it work while her body catches up.

I did get to talk with the pulmonologist (on for this month) today. He said he would like to make one more wean on Monday (if all is well) and then start trach collar trials next Thursday. He also said he would not do any more x-rays unless they see something they need to look at. On Tuesday of next week, Ashleigh's speech therapist is going to start letting her play with rice cereal.

She is showing signs of teething today, but doesn't seem to be as bothered by it for now.

Her little bottom is still red. I think it looks a little better today. Perhaps the cream we started using yesterday is helping. Someone suggested (in a post) that we try Resinol, so if this stuff we are using now hasn't helped in the next few days, we'll see if we can give that a try. Thanks for the suggestion.

Her weight was up again today by a full ounce. That's the high side of how much her care team wants her to gain every night. That's almost a pound a month. We'll have to curb that down at some point, she'll have too many rolls around her neck to do trach care.

Thank you so much for continued thoughts and prayers.

October 18, 2006 (evening)
It looks like we have a little more evidence that part of Ashleigh's 'uncomfortable-ness" is because she is teething. They ordered Ora-Jel today and her nurse put it on her gums tonight for the first time after she woke up from a nap fussy. That seemed to zap the fussiness a good bit, though she still wasn't all smiles.

During trach care tonight, I sat her up so we could tie her trach ties (which she despises), and she used her legs and rear end to scoot down the bed. I was impressed. Of course at the time I was holding her head up and trach in, so I just had to kind of follow her body as she scooted. I'm sure from an outsider's view, it was probably pretty humorous.

She seems to be working somewhat harder to breath. This may just be the way she has to breath for a while as her body compensates, but we'll need to watch and be sure she's still making progress in growth and development. Her breathing is the most important, so her body will put everything on hold if she needs the energy to breath.

They didn't make any weans today. I never talked to the doctor on round or Ashleigh's practictioner today, but I was told they were not planning on making weans tomorrow either. I'm leaning more towards letting her get through the weekend before we make any more vent changes myself. One, to be sure she is stable on these settings and two, 'cause it's the weekend - and weekends are never a good time to start making potentially life altering changes.

Her poor bottom is still painfully red - worse than it was a day or so ago. She has a few spots today that appear to be oozing now. We're trying a different cream now that has vitamins A, D, and E, Nystatin, Aloe Vera gel and a few other things in it. Hopefuly it will be the magic tonic that makes her skin heal. It looked very painful earlier today.

She doesn't have methodone now either, so there are certainly multiple variables that are probably working together to make her feel a little on the cranky side.

Her weight is back up over 3800 grams now (that's 8.37 pounds). She took a bit of a weight dip when she had gas so bad last week and was swapped over to Pregestimil for two days. That's when she was vomiting and her bottom first got raw too. Something to be said for the old adage "breast milk is best." She's not gaining as rapidly as her care team would like her too, but she's starting to move back in the right direction again. We've been talking about the idea of introducing cereal just for her to start getting used to the texture and taste in her mouth. I think I remember Michelle saying we got a thumb's up today for speech therapy to start that. Eventually, that might help her add some weight on while still getting all the good stuff from breast milk.

I've gotten so used to those smiles that I felt like I was deprived today. She wasn't dishing them out as often. Teething is probably a pretty good excuse though, so I can't blame her. Over the last few days, she's been sticking her tongue straight out and making drool bubbles. That will have to do for now.

October 18, 2006 (morning)
Ashleigh's x-ray yesterday showed her right upper and middle lobes reducing in size. That could not have been a better answer to many prayers. The pulmonologist we spoke with yesterday did not seem as concerned as Ashleigh's primary pulmonologist. I noticed that the density of the right lung was darker than the left lung - so I want to be sure that is not an issue. From my understanding, the darker the lung is the more air it has in it. And that could be a sign of air trapping. I certainly pray that is not the case.

We will continue to have to wait and see how her lung continues to react over time. They will take x-rays once or twice a week to see.

She was a little latchy yesterday and sleepy, but restless. She would only take 20-30 minute naps, but would take a nap again a half hour or hour later. We think it may be gas or a tummy ache, but it also might be early signs of teething. We know with a good amount of certainty some of the sleepiness was from the vent change on Monday.

The pulomonologist on this month wants to make another wean this week and possibly start trach collar trials next week. Trach collar is no ventilator, only humidity into the trach. Exciting, but infinitely scarier than waking up with a black widow spider on the tip of your nose.

Thank you for continued prayers - things appear to be better but I still feel like we don't know for sure what her lung's 'intentions' are. Prayers are being heard - that's for sure. The x-ray showed us that. My prayer is that things will continue on the healing path - I'm not sure how many more dips on the roller coaster ride Michelle and I can handle. And I certainly don't want Ashleigh to experience any other ups and downs either.

October 16, 2006 (evening)
We bathed Ashleigh again in a 'tub' tonight, mostly to help her rear end get better. But after she got used to it, she kicked her leg up and was making herself comfortable. Thanks to Mr. Ducky to help with covering the private parts.

She was not working as hard tonight (to breath) as she was earlier in the day.

She is just so beautiful.



October 16, 2006 (afternoon)
Ashleigh's blood gas was good today - 38 for her CO² and a pH in the normal range. That is news that makes eyes well over and shoulder blades ease - even if but a little. Tomorrow's x-ray seems like an eternity away. If I could step out of life and run there faster I would.

Her bottom continues to get better. It's pretty much down to little red bumps now.

She's officially off of methadone as off today.

The rash on her chest seems to be pretty much gone.

They made another vent wean this morning. They reduced her pressure support to 9 from 11. We can tell she is working harder to breath today. We can see her chest contract a little more. Traditionally, she's done pretty well at compensating for the pressure support weans, but we're getting down to low numbers now. It's a muscle thing, so she will show us if her diaphragm will strengthen enough to make up the difference. Hopefully her airways will remain open as she works harder to move air through them.

Trach care today went really good. Ashleigh was relaxed and only got mad right toward the end when we affixed her trach ties around her neck. That's usually when she get's really mad (understandably), but today it wasn't too bad. We were extremely proud of her.

So tomorrow will give us another clue to this long and agonizing wait on what's going on with Ashleigh's lungs. Thank you, thank you, thank you for your continued prayers for Ashleigh's lungs and overall health. I can't express the appreciation, I don't think the words exist.

October 15, 2006 (afternoon)
Apparently, the doctors are a little more optimistic than we are. They were comfortable with not getting an x-ray today. Tomorrow we will get a blood gas and they are planning on doing another x-ray on Tuesday unless they see changes in Ashleigh's behavior or other signs of distress.

This is quite a change from the NICU where decisions seemed to be more heavily weighted on information from tests and x-rays and cultures, etc. I guess that is partially where our perception is still rooted. It's something we have to get used to. It's a hard thing to explain. It's a different mind set. A different culture and we have to decide where our level of comfort is somewhere in the middle of it all. How much we question and how much we trust.

Ashleigh is helping us in that decision though. She has been more playful today and sleeping much less than the last few days. Last night, she didn't sleep all night (like she normally does) and she only took two naps while we were there earlier today.

Her bottom looks better today but is still chapped. Even with that, she has been playing and interacting with us. Michelle held her for a long time this morning. She was relaxed and was quite delighted with the fact that she could control the movement of the little hand in front of her face.

The rash on her chest looks better too. By the way, we found the detergent (we were using before) in a 55 gallon drum (not quite, but close) - so we shouldn't have the question of detergent come up anytime soon.

So I know you're reading this saying, "You don't sound worried, what happened to Wednesday night when things didn't look right?" Let me assure you, we are worried. I'm dealing with shortness of breath all over again and Michelle worries enough for both of us, maybe enough for every body reading this. (I know that comes as a shock to some.) I guess what happened boils down to three things: 1) Ashleigh has done well through the weans made and stayed pretty consistent (from a respiratory standpoint) since last Wednesday, 2) the x-rays showed us that the lung is not getting larger (well, can't speak for today), and 3) the pulmonologists have enough confidence in not getting an x-ray. They do this for a living so even if I had zero faith in any body (not the case, just saying), you have to accept that they know more about this than I do.

Those three things don't take away my anxiety or Michelle's worry, but it helps us keep things in a little better perspective for each new moment that the days keep generously handing out. We're still on guard. Ashleigh heart rate got down to 102 earlier today while she was sleeping, then stayed in the 120's while she was awake. That threw up penalty flags all over the field for Michelle and I. Later, Respiratory was giving her chest PT (helps break up any mucous/secretions in the lungs) and her sats dropped to 89. They turned on some oxygen and yellow flags went flying again. As soon as they were done, they turned the oxygen off and her sats stayed the same (as it was on oxygen). I'm quite sure our practitioner today thought we had lost our sense.

We're on edge okay. Our nerves are a little frayed. We don't want to see Ashleigh go through any more than she already has.

It's awesome, though, that she is still being Ashleigh - still smiling. It looks like over the next few days we'll continue to get clues as to what the big picture will show for her right lung and her overall health.  I said the other day it was torture not knowing whether she was getting better or worse. For now it appears she is getting better. One day at a time.

Thank you for your continued thought and prayers.

October 14, 2006 (afternoon)
Based on the pulmonary doctor on today, Ashleigh's x-ray looked about the same from yesterday, with a possible slight reduction in size (upper right) compared to yesterday. That is sooo much better than that lobe getting larger, though we still do not know for sure what this means for her longer term.

Her heart rate was normal today, in the 120's and 130's while sleeping and in the 150's and 160's when she's awake. That to me is a good sign that all her lung movements are not affecting her heart.

They did not do a blood gas this morning.

She is still sleeping quite a bit. She's been in a little better mood than yesterday when she's awake.

Her bottom started to get raw last night and is red today. We've been putting a custom hospital made paste on it and also letting her "air out". Hopefully that will heal soon. She has enough reasons to be cranky.

Mom and I are more optimistic today, not fully relieved by a long shot, but certainly able to think a little more clearly.

Everyone has really helped get the word out on prayers for Ashleigh's health. Thank each of you for your prayers and thoughts and efforts, I don't know how to convey the importance and gratitude felt - except to say thank you over and over again.

October 13, 2006 (afternoon)
After multiple conversations with two pulmonologists over the last 24 hours, we are still in about the same position. The x-ray this morning showed the same image: a large upper right lobe and lower lobes on both sides well ventilated. So far, it does not seem to have affected her heart (other than moving it around) or blood pressure. This is probably the best news we could have expected today - that it is not worse.

They did not do a blood gas this morning (shows her pH and CO² levels, among other things).

She is sleeping a lot, mostly irritable when she is tired - in between awake and sleep. This morning she was awake for a little while and was in a pretty good mood (maybe 45 minutes). Her sleeping a lot is very characteristic of her after a wean - especially PEEP changes. By Sunday we should now if her sleeping is from the weans or from something else. That's about how long it took her last time for her body to show signs of catching up to the vetilator changes.

They discontinued PT for right now. They have also discontinued attempted bottle feeds.

She had a rash on her chest yesterday that seems to be a little better today. It was raised last night and it's just red now. They started putting a topical cream on it last night. Last week we did switch back to a detergent we haven't used in a month or more - so that may very well be the culprit. ...we'll be switching back just in case.

It's torture not knowing. Not knowing why. Not knowing for sure if things are even getting better or worse. Each day that her upper right lobe does not get bigger is better than the alternative, no doubt - but we don't know if the big picture is getting better or worse right now. We don't know what kind of damage is already done. If damage is done, how much and how it will affect her long term.

The good news is this: She is semi-tolerating two significant weans. She is not requiring oxygen. She is still maintaining her saturations. Her CO² levels are still low (as of yesterday). She doesn't appear to be uncomfortable - especially when sleeping (which is a good baseline to look at). And most importantly, she is still with us - teaching us all very important basic lessons in life.

Thank you to everyone who stepped up and made phone calls, sent emails and bruised their knees. I would not wish this ride on anyone, but it is because of each you that Ashleigh still continues on and we are able to somehow endure through this. One hour at a time is where we are.

October 12, 2006 (afternoon)
Nothing is conclusive yet as to whether her right lung is trapping air, but based on the CT scan earlier today her upper right lobe has an increased amount of air in it and is pushing far over onto her left side now. Her heart is being pushed further to the left. Both her lower lobes (left and right) have air in them right now.

Her blood gas as of this morning was still good: 40.7 CO² and her pH was good.

They have decreased the inspiratory pressure in an effort to limit the strain on her lungs.

The strategy is to continue taking x-rays at least once a day to monitor what is happening for the next few days.

We don't know where we will go beyond that right now.

October 11, 2006 (evening)
How do I start this update? It's one that I had hoped I would never have to write again. One that instills fear and anxiety and other emotions that persist through stressful times.

We received a call from Ashleigh's primary pulmonologist late this afternoon. He has concerns over what he is seeing in her x-rays from earlier today. Her right lung is enlarging and beginning to push over into the left side of her body. Her left lower lobe is also showing more signs of air movement. Alone, seeing the left side would be a good thing. But the big picture is much less assured. There are a multitude of scenarios. The last x-ray was on September 27, exactly two weeks ago. He says that x-ray looked almost identical to her previous x-rays. So this change has developed some time in the last two weeks.

The best scenario is that her lungs are compensating for air her body needs and that's just the way it's going to do it. The worst scenario is one we have feared since very early on, that her right lung begins to behave as her left lung did, trapping air and eventually becoming emphysemic - not only useless to her body but also detrimental. If it turns out to be the worst case scenario, we were told long ago her chances for recovery are very small, if any.

They will perform a CT scan tomorrow morning to get a better picture of what is going on. Also a blood gas in the morning to be sure her CO² and pH are still good. On Monday of this week, her CO² was 33, which is excellent, and her pH was just as good.

Tonight just by looking at her and the numbers on her monitors, everything appears to be the same as it has been. She is still easily calmed when she gets upset and still interacts with anyone she comes in contact with. She has had slight dispositional changes in the last few days, but has had gas issues during the same time frame.

If this is a normal shift for her compensation, the big question is why now? Why would her right lung not have done this several weeks (and even months) ago? I could fill the screen with questions right now. Questions that we might have answers to as time goes on, and others that I'm quite sure will never be answered. I don't know why. I don't know why.

As you read this update, I hope you will help us pray incessantly for Ashleigh's health. For her lungs and airways. For her digestion, growth and development. For her mind and spirit.

October 11, 2006 (afternoon)
We gathered focus today on where we are in the process of getting Ashleigh home. It doesn't look like we'll be getting home before the end of the year ...or very soon after. The primary reason (for the defined time frame) appears to be lack of availability for vent training. It may take that long for Ashleigh to let us know where she can go with (or without) the vent. Either way, it looks like we'll have plenty of time to find out. We can't go home right now because she needs the vent - and we have to be trained. If she is able to get off the vent before the first of the year (or whenever we can get trained), it would be a little bit tricky to bring her home during the height of cold/flu season. If she were to get something that affected her from a respiratory standpoint, we would end up right back in the hospital again. If we could go home with the vent (assuming we were trained), we could weather any minor respiratory problems.

It's not what we had been hoping for. It's very discouraging. But knowing what we are facing is much better than being dragged through each week not knowing where we are heading or where we are in the process of getting there. We also agreed today that it would be better if we had one pulmonologist to funnel everything through - a captain of the ship if you will. That way we are staying on a course rather than having wavering opinions rule what happens daily. We will have meetings every two weeks with whomever is on for the month and with Ashleigh's primary pulmonologist (who will be playing the role as 'captain'). This will also help us make big picture adjustments every few weeks versus working every day to know where we are and what's happening tomorrow.

It's still all quite hard to digest. I never envisioned things happening this way and for it to take so freakin' long to get worked through. With that said, I have to remember that Ashleigh is still here. Still making improvements. Still very much alert, active and loving. So far, we still have insurance. We still have a home and I still have a job. We still have cars that can get us back and forth. We still have friends that have continually been there and helped us so much already. And we still have our family intact. God has delivered. I just walk in circles hurried by life. He walks straight and deliberate, orchestrating each step. It comes down to perspective and attitude.

Father and Creator, thank you for being deliberate, yet patient with me. I pray that you will allow me to clearly see how you are healing Ashleigh's body - physically, mentally and spiritually - each day. Guide my eyes, ears, mind and tongue so that I can help my family thrive, even through this time. Share with me your love and understanding, your strength and perseverance, make me stronger so that I can be capable of serving you. Amen.

October 10, 2006 (afternoon)
We still don't quite have a plan in place yet regarding the whole vent situation. The pulmonologist seat this month must be a hot one, we will have dealt with at least four pulmonologists by the end of this week. I started to ask if I could just wear the coat for a few days. Nothing would get done, I admit, but there's something to be said for consistency.

Ashleigh had some severe air in her tummy yesterday. She was in extreme pain for a while off and on. Simethicone (Mylicon) to the rescue. I started to suggest some Bean-o but read it's suggested for persons 12 and up. She had one little bout earlier today for a few minutes, but overall it seems like the simethicone is working. They are giving it to her every six hours right now. We've learned we can deal with trapped air in her tummy much easier than air trapped in her lungs. (That was a really poor 'funny', in case anyone missed it.)

We haven't made any weans this week so far. Her cough is still a bit course, but it sounded better to me today. Other than the whole gas situation, she's been doing pretty well. From a respiratory standpoint, I still would say she's overcoming the last bit of that cold/virus, but she has leveled out. She hasn't gained any weight over the last two days, but she's got some 'issues' with the whole digestive area, so we'll see if she starts gaining again after all that passes (...literally. I'm on a roll today.)

Michelle and I did trach care with some help from Ashleigh's nurse today. It went fairly well. Ashleigh didn't like it, but I don't blame her. She's getting strong enough to start clocking people in the eye and probably will once she gets her coordination perfected.

PT came and worked with her yesterday. It amazing how much she has progressed from a motor-skills stand point over the last two weeks or so. She still has to work real hard to get her hands where she wants them, but if the interest is high enough - she'll get it. She also is moving her head side-to-side much better over the last few days.

I don't think I mentioned previously that Ashleigh should be off methadone by next week. We've been making weans every Monday and I believe the last step is next Monday. Hooray.

For those of you who continue to pray for Ashleigh, please pray that we will be able to develop a plan for her getting home safely. We realize plans often don't work exactly as originally laid out and that changes along the way will be required. At the same time, we don't want to get into November and still not know where we are in the process. I know things are not black and white, but my favorite color is becoming very dark grey.

Thank you all for your continued prayers and interest in getting Ashleigh home. We would not have been able to get this far without you.

October 8, 2006 (evening)
It's Sunday evening and I'm wondering what happened to the last few days. I apologize for the lack of updates. I've had a little bit extra on my plate.

Big sister's birthday party was this weekend, so we spent a little extra time traveling and eating birthday cake. I think it was a success, she seemed like she had a good time and so did the other girls that came. We really appreciate the gifts and allowing her guests to come and spend some time celebrating with us.

To the updates. I'm sure the biggest thing is that I have not had a chance to update on the results of the bronch performed last Friday. It did not happen on time, so unfortunately I was not able to be there, and the pulmonologist that performed the bronch will be out this week. What information I've received so far is that Ashleigh still has tracheomalacia (upper airway starting just below her vocal chords), but her bronchiomalacia (the smaller airways in and near her lungs) is getting better.

Right now, it appears that it's still a bit of a coin toss on how much longer the vent will be required for her, but I'm hoping for some clarification so that we might be able to create a path to getting home. I need more details and hope to get those tomorrow.

It took Ashleigh the rest of Friday to really get back to some normality. Her throat is still very sore since the bronch - you can tell when she coughs that it hurts. It sounds like a cough near the end of a bad cold. I don't think this has to do with her cold though. Her cold, by the way, seems to continue to be less of an issue. Her nose is still running some off and on, but she still has the NG tube for feeds - so I'm sure this causes some of the irritation and nose running.

I did receive a copy of the results from the lab/pathology performed (on her lung tissue from her second surgery) in Arizona. I need to read through it in detail (and bust out the medical dictionary). Her primary pulmonologist didn't seem to think there was too much new in the report. From the quick overview, I think it does provide a more solid theory on how and why things happened in the manor and order of events.

Ashleigh was in a very good mood most of today. It was very encouraging to see her acting, in many cases, as a normal baby would. Smiling, interacting and discovering the world around her. Yet at the same time, it really tugs on me emotionally. I guess seeing some of the normal baby characteristics subconsciously makes the mind want to have things 'normal'. I don't care for the normal we're operating by right now. I'm ready to try a different normal.

I know that sounds like a selfish statement a young child would make. I do need to to get me perspective and attitude back in line. It's just hard sometimes, especially when things don't stop long enough for you to pull yourself to the side and make it right. You know, time to think and pray about things and get focused on what matters. When I don't do that, it's easy (for me) to get tangled up in something stupid that consumes my time and energy, and at the end of the day is totally irrelevant. That's probably something we all struggle with - at least I hope I'm not alone in that battle.

Speaking of things that matter. Thank you to whom ever did what they did at big sister's school. I hope your kindness and generosity is received back a thousand times over.

Thank you all for your continued prayers for little Ashleigh. It is so awesome to see her progress. Of course, we wish it were quicker. Even further, of course we wish she were home - healthy and happy. But life throws all kinds of stuff at us -  so I will continue to remind myself: choose virtue over velocity.



October 5, 2006 (evening)
Tomorrow morning (Friday) the pulmonologist (that's on this month) will perform a bronchoscopy on Ashleigh. This will give us a green light, yellow light or red light on how we need to proceed with weans regarding her PEEP which she is now receiving to keep her airways open.

This will also help make it a little clearer the path and time frames we are facing.

They put the IV in tonight. Her feeds will be stopped in about 4 minutes (midnight) and she will be switched over to IV fluids until after the bronch. She will also be receiving her sedation through that IV. I think they will use versed and morphine. I wish so bad I could have taken that IV for her. I could read every emotion through her eyes and head gestures. I wish I could take it all away and heal her body in the time it takes a light bulb to brighten a room. I don't understand why God has not, but I don't understand why kids are shooting kids at schools or why people die every day from starvation. I may never understand, but it still doesn't change how much I wish I could take it all away for her.

Please be in prayer and thoughts tomorrow morning (well, this morning) for Ashleigh. It is scheduled for 8:30 a.m. Whatever state her airways are in is where God wants them to be right now. What other state would they be in? It's His plan, not mine. I doesn't matter which emotion comes out of it for me, it just matters that I can accept it no matter which fork in the path it takes us down.

October 3, 2006 (afternoon)
We think Ashleigh's cold is getting better. She seems to feel much better and has been more responsive and engaging today. We spoke with her current pulmonologist this morning. They may do the bronch later in the week depending on how well Ashleigh is feeling then. They may also try to do a wean immediately after - again depending on what they see and how she's feeling.

Speech Therapy came and worked with her today. Ashleigh thought it was pretty humorous that someone would stand there and make funny noises and faces at her. She did mock mouth movements fairly well, especially the kissy mouth. It was good to see her having fun and being amused either way.

Ashleigh's nurse this morning changed out her lifoam and said it was not as saturated as it was yesterday. That seems to also be a sign that she might be getting over the cold too.

This morning when I got there, her nurse had her sitting in her purple Boppy with a purple dress/outfit on her. She looked like she was ready for a photo shoot. I know I'm biased, but she is beautiful. Especially when she smiled at me when I walked up to her bed. Sorry, I should have captured a photo - but I was to engrossed in the moment.

Her sats are still bouncing around in the mid 90's right now, though we've been seeing 100 a little more frequently today.

Thank you for prayers of health and healing. The prayers on her behalf have been heard. Isn't it awesome that two months ago she had a portion of her lung removed and this week her body is fighting off a cold on its own? How grateful am I? I can't go there without turning into a slobbering mess. I am hopeful that in another two months, I can compare her healing and progress again with such stark contrast. With continued thoughts and prayers, I am hopeful.

October 2, 2006 (afternoon)
No weans today. Breathing treatments every 6 hours instead of 4 (like it was last week). No scope tomorrow (they were planning to look and see how her airways are doing regarding malacia). She's been awake a pretty good bit today, I guess kind of average. Her mood has not been as pleasant as yesterday, but it hasn't been grumpy either. We're still gowning and gloving so she still has a hard time figuring out why everyone's hands suddenly turned different shades of blue.

PT came and worked with her this morning. She's definitely getting better coordination and hand control. I was watching her last night and she was pulling her hands together and playing with her fingers. A while back, she would not bring her hands/arms together in he front.

Her breathing seemed to be okay today, though her sats have not been as high as normal. That's probably to be expected. I'm sure my sats don't look great when I have a cold either.

The padding that we put between her trach and neck (called lifoam), has been getting really saturated over the past week so we've been working towards getting it changed out twice a day. I always swap it out during trach care in the evenings, but by that time, it's soaked. I guess her having a cold increases the amount of secretions around her stoma. I noticed the other day that her skin was a little red and sort of wrinkly, like if you stay in the tub too long. As much as Ashleigh dislikes changing out the lifoam and trach care, I am quite sure she would prefer to have that done twice a day in place of having irritated and raw skin.

It's only Monday and we're already worn out from the weekend. Whew.

October 1, 2006 (afternoon)
The last few days have been physically and mentally draining. With all the respiratory fluctuations and crankiness, etc. - we had our emotional seat belts on not really knowing what to expect next. Last night we were told Ashleigh had RSV (Respiratory syncytial virus), which is like the mother of all colds and has symptoms similar to pneumonia and bronchiolitis. All we saw was some sneezing, a congested nose and her sleeping a lot. It's all new to us so last night we were beginning to mentally hunker down for setbacks, thinking maybe she was in the early stages. RSV is a nasty virus very well known in hospital environments. So when it crops up, hospitals go into 'gown and glove" mode - and so they should for the protection of patients, staff and visitors.

Today, I went to grab some lunch and the pulmonologist came in and told Michelle she actually has the Adeno Virus - commonly known as a "cold." It's one of the more flu-like colds that can last up to 10 days. Not to downplay it, she has serious respiratory issues that even for what we generally consider to be a 'common cold' could quickly funnel into major issues for her. It may have already played a role through having to adjust her vent settings up this past Friday. But I wish someone would have done due diligence before saying she was RSV positive. My perception and research indicates these are two completely different viruses, so I'm not sure where the confusion came in.

She seems to be feeling better today. She was awake for three hours a little earlier and in a very good mood on top of that. Yesterday, I'm not sure if she was awake for more than 3 minutes at a time. I don't know where she is in the process of kicking the virus to the curb, but hopefully it ran a short course and it's on the way out. Good riddens and don't come knockin'.

She has been breathing easier for sure after we went back up a little bit. She has also been receiving breathing treatments every 4 hours versus 6 since Friday evening. I think the plan is to wean her pressure support back down tomorrow and go back to treatments every 6 hours. I agree with that. I don't agree with weaning her PEEP right now.

Why? Her body has the capacity and ability to grow into the pressure support weans. Pressure support changes affect the body by way of muscle contractions. Just like jogging everyday - over time you can run faster and further (or is it farther?) - your diaphragm, lungs and other affected muscles adjust to become stronger and add capacity. PEEP, however, affects an area that has nothing to do with muscles, its all about cartilage. For infants, cartilage grows more rigid as the body grows. That I know of, you can't exercise cartilage and make it stronger. So it would make sense to me to wean the stuff that her body can adjust to and give her body time to grow. Then work on the PEEP weans. It may be that you have to work on them together - like a see-saw. But my guess is that this is not true, because some people only require the PEEP (or CPAP - or Continuous Positive Airway Pressure) and no other support. I'll ask a pulmonologist. So just ignore me until then. I'm just thinking on screen with my fingers.

We still feel buckled in pretty tight, and I guess we will until we get a sense of direction for a few days. Right now, we're not sure if we're heading forwards or backwards.