March 2007

 

 

Some photos from March.

March 29, 2007 (roosters still sleeping)
Dad: These past weeks have been good for our little Ashleigh. Big sister is teaching her all kind of new things to do - hopefully all good things! She is certainly making small physical development steps. She is starting to clap on her own, starting to make more facial expressions (to express her emotions) and is working on standing up. Last night she just about pulled herself up from a sitting position in Michelle's lap (while holding on to Michelle's hands)! She likes the idea of standing - probably because she gets so much praise out of it. She's such a ham for attention.

We have to help her keep her feet on the ground flat and facing the right direction when she stands but she has the strength now to do it on her own. In her crib, she'll hold on to the rail of the crib and stand by herself. That's a real big visual step for us all to see, so I'm sure there are other things a physical therapist would pick up on that we are not.

The pollen in the air is still bugging her a bit, but not as bad as last week. Her secretions are starting to taper down. Last week we had to suction her trach frequently, especially while she was on the trach collar during the day. I guess that aligns pretty well with allergy symptoms.

Speaking of trach collar weans, she's doing very well with her 8 hours a day. No problems there, even with the side effects of the pollen. She occasionally gets a little wheezy during the day before her breathing treatment. I think we had to do an extra Xopenex treatment once since we've been home. We've done her breathing treatment (that she gets at 1) 15-30 minutes early a few more times. That's not bad considering all the environmental changes and addition of spring in the air.

We've miraculously managed to keep her bottom in good shape for what, at least a week now. Hopefully we can keep it that way. While we're on the topic, it's odd how much her poops will change in color and consistency across days. The only variation in her diet is what Michelle eats before she pumps the breastmilk. We're still using half breastmilk and half formula. We've been doing that for several weeks now. That seems to be working well for the time being - both for Michelle's 'production' and Ashleigh's tummy. We have to watch the iron intake because of the extra formula. Her primary pulmonologist at the hospital said once we get more formula than breastmilk, we would cut the added iron out of her vitamins.

We're still not having any nursing. One came to visit yesterday afternoon to see Ashleigh and get a feel for the landscape. She would work two evenings a week if she decided to try it. Both Michelle and I were under the impression after talking with her that she didn't seem to be interested. We'll see and go from there.

We've got Ashleigh's routine down and her pattern (for right now) is fairly predictable. But throw in a few days of teething or other issues and that would spin the entire ecosystem we've been living under out of control. It's a delicate one to say the least. We've settled with just dealing with the necessities. That's all the time and energy we can do for now. Things will continue to get better (looking big picture). You do what you have to do for the moment and work towards improving it each day. We have made huge strides at improving our schedule and Ashleigh's - so we're making progress.

We hope you all will continue to pray for Ashleigh's health, growth and development. Her lungs and airways seem to be improving looking at the success of her daily weans. We hope her pulmonologist is right about her being able to come off the vent before the end of the year. I think her physical development will improve at that point. The vent is a wonderful tool, don't get me wrong. But the goal for Ashleigh is for the vent to allow her to grow strong enough that one day she's not dependent on it any longer. Much like the circle of life for parents and children.

March 22, 2007 (afternoon)
Dad: Okay, everything is good now. Ashleigh's supplies are properly labeled. Our neighbor let us borrow their label maker. Thank you very much. Seriously though, everything is going fairly well. Still not a whole lot of success with nursing but we're managing. Ashleigh is doing well. We have her first local physical/occupational therapy appointment tomorrow. Michelle was helping her stand up a little bit this morning. She's wobbly at it but I thought she was doing pretty good considering she's still trying to catch up.

We haven't had a good way to weigh her so we don't know whether she's gaining weight or not. It's hard to tell when we see her every day. Some days we look at her and think she looks chubby - other days not so chubby. Oh well. I don't think she has lost any weight, but not sure whether she is gaining either. I hope she is. I may have already mentioned it but her weight at the pediatrician showed she had gained 3 ounces (10 lbs, 13 ounces). Still shy of 11 darn it. We really won't know for sure until we go back either to Children's or to her pediatrician and she is weighed again on those same scales. The scales don't seem to be perfect when you get down to small measurements.

I think she is used to being home now. She recognizes her room and likes taking little trips around the house. I'm going to put an electric motor on her equipment cart to make that easier. I'm kidding, but that is an interesting idea. Hmmm.

We've been eating in front of her and letting her hold different foods. Most of them she drops out of her hand first, then holds them again. She eventually heads for the mouth but in most cases it doesn't get any further than her lips. A few foods that are either really salty or really sweet get a few minutes of attention before she makes a face or shudders. She has improved in this area but has a long, long, long way to go. I'm encouraged by her still grabbing food and bringing it too her mouth.

Life is coming at us so fast right now that I'm having trouble remembering what happened even yesterday. Besides our door bell going ka-put. Michelle's dad came over last night and figured out the problem. It didn't even get on my priority list (I ran out of paper) so I appreciate her dad taking a look at it. Until we get the part, people will just have to knock hard. During the day when Ashleigh is on her trach collar wean there is a compressor that pushes air and mist to her trach. It's pretty loud so we've had a few people standing at the door for extended periods of time. Sorry for those awkward moments folks.

I've been working some this week and Michelle stays home with Ashleigh. So naturally as soon as I hit the door she's ready to make it swing the other way. It's tough being in the house all day - especially with the weather lately. It's been nice outside. She's not quite up to packing up everything and heading out by herself yet. We did get Ashleigh out the other day for a few hours. We're a little nervous about all the pollen and stuff in the air. It is nice outside temperature wise, but the pollen is very thick and we don't want to add to the level of difficulty of the game right now.

We brought Ashleigh to a local clothing store. It went pretty well. Had a few funny stares, especially from some younger kids. We got a chance to meet a real nice lady that has been praying for Ashleigh. She recognized us and said her church had her on their prayer list. Now how awesome is that!?

Speaking of, thank you all for your continued prayers. We really appreciate everyone. Our hope is that she will continue to stay well, eat by mouth, grow a lot - and stay home to do it all!

March 15, 2007 (morning)
Dad: Hooray, we've been home over a week now. Ashleigh is doing well. A few little speed bumps here and there - her hiney, runny poops, things like that. On the other side of things, she's lots more active - doing barrel rolls in her crib and scooting around like an inch worm on a blanket in her room. No more new teeth yet, but she knows how to use the ones she has. Not for food, but for chewing on her toys. I think the genetics team missed the gene that shows she's part puppy. She's all smiles when her big sister is around. She loves playing.

Things are starting to get some type of pattern to them - but Michelle and I are having trouble keeping up. As Michelle mentioned in the last post, we were supposed to have some nursing help. Thanks to our pulmonologist for having the foresight to work with insurance to get it arranged. Unfortunately, we've had only two shifts here since we've been home. Michelle and I are taking turns at night. It's not necessarily hard work - it's just constant work. Between alarms going off, breathing treatments, hanging feeding bags and changing poops neither of us are getting enough sleep. Some of that stuff is pretty normal for having a baby in the house I suppose. It's hopefully a phase that will get better as we get better at it and Ashleigh grows.

We are supposed to have some help with nursing this weekend. Hopefully that will work out.

It's literally taken us over a week to get everything (okay, almost everything) unpacked and sort of organized. We spent the first few days getting all the required stuff unpacked and accessible. Then we started working on all the other. We've turned her closet into a supply room. It looks like a very tiny version of a medical supply store. I just need one of those Brother label maker thingies and I'll be all set. : )  My parents teased me and asked what was wrong with masking tape and a sharpie. My reply was that no one would be able to read any of it if I wrote it!

We've ventured out a few times so far. Ashleigh had an appointment with her pediatrician this week. She's nine months old and that's the first time her ped has seen her. Out of context, that would sound kind of strange. That trip was the longest out of house so far. Two hours to wait, half an hour to get business done, plus travel time and load time adds up to around four hours give or take. I have to say though we have load time down considerably compared to the first time we traveled with Ashleigh. It's still cumbersome, but we're getting better at it. It is still a two person job right now. There's a lot of stuff to load and getting it all moved and set up in the car takes some effort. I do think over time either one of us will be able to do it as second nature. We're still just over a week into it.

My work has been supportive through the entire journey, but hugely supportive over the last few weeks. I've started back working this week trying to do more than just answer emails. Next week I'm going to venture to the office. I was really hoping to have nursing as part of the daily routine by now. I feel horrible leaving Michelle, but life is just kind of like that and we'll have to learn to make lemonade if you know what I'm saying. I have to keep reminding myself - all this will take time. It's still one day at a time, and one minute at a time if need be.

There have so many people that have helped us along this journey and continue to do so. The generosity is simply overwhelming at times. We appreciate everything so much. We hope you will still keep Ashleigh in your thoughts and prayers. We are home and that chapter has ended, but the next chapter has only just begun.

We've taken a good number of photos and I'd like to get them all up soon - but here are a few for now.





March 8, 2007 (afternoon)
Mom:  Things have been going over all pretty well. Ashleigh Is adjusting well in her new surroundings. She is constantly looking around and checking things out.

She slept most of the day today, hopefully it's just a growing spurt. She usually has a temp of around 96º, today she has been running around the high 97º to 98º. I know that is not considered a fever but is still higher than usual for her.

Her hiney is seriously red, almost chapped or sun burnt looking with fever to the touch. We need to try to nip that in the bud if possible before it starts breaking down. She hasn't had a lot of stools, so I don't know why that would be doing that.

We did get her out today for a short while. We loaded her up and picked Emily up from school and came back. It might seem really boring to some people but that was an adventure for us.

Please continue to pray for Ashleigh as she still needs to grow and gain weight to help her airways become stronger. For her to stay well enough to stay home.  Also for Jason and I in the sleep department. We are supposed to have nurses to help out some, but it hasn't been real fruitful.

March 6, 2007 (afternoon)
Dad: Sorry for the delayed update. I had all good intentions of getting the site updated first thing this morning. But then first thing turned into the next thing and now it's 18 hours later. Anyway:

Drum roll please...

WE'RE HOME!

We left the hospital today at 12:09. It was very sad and heart wrenching to say goodbye to a great number of people that took care of Ashleigh along the journey. But contrasting that was the giddyness of everyone being home for the first time. We made a few short stops along the way home. One for food - we landed with our feet on the ground this morning and I was hungry. The second one for a 'get out of the car seat/change my diaper' stop.

Some of our friends made signs and hung balloons and cooked dinner for us. It was great. When we got close to our house we started seeing yard signs saying "Welcome Home Ashleigh". Then there was one sign at our corner that had a photo of Ashleigh on it. Michelle's tear ducts forcefully erupted and mine were about three seconds behind hers. Couldn't help it. Be nice. I haven't had a lot of sleep.

The house was clean and decorated when we got here. Ashleigh spent some time looking around and checking things out - then took a nap.

Mom, Asheigh and big sister sat on the sofa tonight and snuggled for a little while. That was priceless for me.

There's a lot more to tell but my eye's aren't cooperating with my brain and so I'll have to attempt to post more about today later.

Most importanty, thank each of you for your continued love, prayers and support for our family and Ashleigh. We would not be home without the thoughts and prayers from each of you. Period.

March 4, 2007 (afternoon)
Dad: Two more nights and hopefully we'll be heading home with Ashleigh. The last few days have gone by fast. Okay, the last few weeks have gone by fast.

We're still acclimating to the different equipment a bit. I noticed yesterday that the ventilator breaths seemed to be giving her more pressure and that her breaths were slightly minimized. It didn't seem to affect her in any way best I could tell. I looked through the settings last night and couldn't find any incorrect settings. I asked her primary pulmonologist about it this morning (fortunately for us he is on this weekend) and he quickly caught that her mandatory breaths were being volume controlled instead of pressure controlled. One little green dot on her ventilator display but with very different meanings. I felt a half inch tall and am frustrated with myself that I hadn't put two and two together and figured it out. I should have. But I am glad that I picked up on the differences and asked about it either way. Ashleigh only gets six mandatory breaths per minute so the change wasn't catastrophic. If she had more mandatory breaths it would have made more of a difference. She has fairly consistent air movement around her trach so that's primarily why she's on pressure control. I knew that.

We took Ashleigh with us down to the church service in the hospital this morning. There is almost always some elbow room so we felt comfortable making that journey. She did pretty well, just started getting her feathers ruffled a little towards the end. She's really not much for being held. She likes to have room where she can wiggle around and not feel constrained. We kept her occupied (just like with any normal baby) and she did okay.

The little munchkin is taking a nap right now, so I guess that wore her out. Michelle and I are managing okay. It is very tiring though. She has feedings, breathing treatments, medicines and equipment maintenance going on just about 24 hours a day. Plus the more fundamentals of making sure her bottom is clean, she's not sticking something down her throat or normal baby kinda stuff. It's a handful. Just seeing her smile makes it worth every bit of it.

If you have time compare the photos toward the bottom of this page with the ones on this page. This is what I believe is known as a miracle.

Always know that no matter how grim things seem - keep your faith, cling to every little hope and never stop loving.

Thank you all for your continued thoughts and prayers.

March 3, 2007 (afternoon)
Dad: We made it out and back yesterday. I uploaded some photos from our outings. Ashleigh did pretty well. We had a very minor equipment issue, but it worked out okay. It was a little unsettling for us to walk out the hospital room because we swapped her over to her home equipment, packed everything up and headed out. If she was not able to do well off the vent I would probably not have gone. It took the hospital's bio-med department ten forevers to review the equipment. The home health care equipment supplier had it here on Monday. Between that and just making sure we had everything we would need in an emergency - those first steps down the hall were probably the most nerve-racking. Once we were out there were a few times where we had to really stop and think about how to do something and it definitely took longer to do everything, but Ashleigh did well and her Mom and Dad made it back too.

We ended up just going to a local shopping mall. The weather was really clear and sunny, but the temperature was still just a bit on the cool side especially with the wind. So maybe we'll make that trip another day once it warms up.

We left the hospital a little before 1 pm and drove to the mall. When we got there it was time for her breathing treatments so we did those in the car. The suction machine pressure dial would not adjust so we had to kind of work around that. We have a back up device called a "DeLee" that we could use to manually suction her. In the end we used the machine, we just had to be careful to not let the pressure get too high. It worked out.

So then we went inside with her stroller packed out with equipment and emergency stuff and got something to eat. That was interesting because by that time it was time for her to eat and get her 14:00 hour meds. We used the feeding pump because she gets her food over an hour. She always gets uncomfortable while she's getting a bolus and her heart rate gets high - so we swapped out trying to keep that under control while we ate too. She konked out towards the end of her bolus for a little while. We strolled around the mall and when she woke up we got her out of the stroller and held her for a little while.

Michelle and I just had it in our minds that people would stare. We just accepted that and expected it. And there were a few, but I got the impression they were more curious than anything else. We got a few "she's so cute" comments and a few that looked like they didn't look on purpose - so they wouldn't stare. It could have been that we were so engrossed with what Ashleigh was doing that we realy didn't pay much attention to others too. For me, it's okay. I don't care if people stare. Frankly, they can stare all they want - JUST DON'T TOUCH! The rest of the world has no clue as to the amount of prayer and medical miracles that went into getting this far. The last thing we need is for someone to unknowingly give her something else to deal with.

So I drove on the way there and Michelle drove on the way back. Michelle did a fantastic job getting all her food and meds ready before we left. I was so zoned into making sure the equipment was a) packed and b) working that I know for sure I would have forgotten something like a syringe or something crazy.

We got back about 4:30 and spent the next several hours getting the rest of her equipment swapped over and set up. Then we did trach care and a bath and it was 22:00 hours (10 pm).

Ashleigh has something going on every two to three hours 24 hours a day so we're working on getting that shift sorted out. I got more sleep than Michelle did last night so we'll swap out tonight so she can get more sleep.

Tuesday is still the big day. We don't know what time yet. Thanks for your continued thoughts and prayers for our family. Its going to be a big transition for sure, especially for Ashleigh.