May 27, 2008

Bringing Home My Baby

586 days later I finally feel like I brought my baby home. 65 days after her birth we brought her from the hospital into the house. But she wasn't in our room or sharing our bed like I'd done with our other two children. When she came home she was cared for by nurses at night that were carrying out doctor's orders in our home. Everything had to be done exactly so. They even asked me once for doctor's orders to breastfeed! Even when we phased out the last of our nursing care at the end of the year Ainsley remained in the bedroom on the main floor of the house that had been so conveniently setup for the nurses. They could watch her at night from the chair in the living room. They were still be able to watch TV or read so they wouldn't fall asleep, wash equipment in the kitchen or do their medical charting all without disturbing us as we slept upstairs. When that ended we would put her oximeter on her at night and sleep with the baby monitor next to our heads. Running up and down the stairs at 3am (or whatever times) when she needed suctioning. So now the trade-off is that I get to run up and down the stairs during the day while she's napping (also using the oximeter and baby monitor). We've stopped using the feeding pump at night for now and we are using the warm mist only occasionally. So electricity needs of her equipment being upstairs are less of an issue now and the noise isn't as likely to disturb our sleep.

So we spent our Memorial Day weekend rearranging the house. Adrian has swapped rooms with Ainsley. His "room" was really an alcove we considered to be the nursery that was separated by curtains. It just happened that he stayed there until he was 4 5/6 years old. Not exactly a baby anymore. It was a bit of a challenge to get all Ainsley's equipment (and other things) into this tiny space but I think we can make it work after we put up another shelf. Adrian is thrilled to have a big bedroom. We've been talking about it for a few months and he seemed truly ready. He went to sleep last night with no problem and took a nap today even though I haven't gotten darker curtains for him yet. That is until Evie came home from school and stomped up the front steps. Which will no doubt be a problem many days. Since yesterday I've lost count of the number of times he's said "MY room". He's even asked me to invite his friends over to see it, esp. because now he has TOYS. It's very cute.

It was really great, and a little weird, to finally have Ainsley in our room like we'd intended before she was born. She kept popping her head up out of the crib looking around like "What the hey is goin' on?" It was cute. She's pretty easy going and has adjusted fine. At times like this I still have moments of sadness when I think of how much time has passed and all we missed out on. She is hardly a baby anymore. But heck, maybe when she's out of the brace she'll get to sqeeze in bed with mommy (and daddy). And heck if she's on the same schedule as Adrian she'll have 1773 more days in Mommy and Daddy's room.

Adrian's last night in his old room.

Ainsley wondering where all her stuff's gone.

Adrian's first night in his new room.

Ainsley's new room.

May 16, 2008

She Chose to Eat

On 4/28 we took Ainsley off her nighttime drip of formula. The pump would run all night at a rate of 50ml per hour. So she had been getting a lot of her calories that way. I decided after the Cincinnati visit to stop, mostly because if she really is refluxing while she sleeps (haven't received the test data yet) it didn't make sense to me to feed her a runny formula while she's laying flat.

Since we made that switch she's become better able to handle larger volumes of food. Imagine that. And she's been hungrier. Imagine that, too. With every tube feeding I give her tastes of what she's getting through the tube. I've always done that to build an association between the taste of food and the sensation of fullness. She's become increasingly interested in eating more. And even taking a few tablespoons of food at a time. I think it's more than the team in Cincinnati was recommending. And I agree with them that it seems of questionable safety to feed her because of small quantities of food getting onto that swollen airway tissue (the swollenness keeps it from actually entering the lungs.) But they believe it's an issue of her not controlling the food in her mouth very well. And how will that problem ever go away if she doesn't eat? So I'm following her lead and letting her decide. I would like to see a successful swallow study before we proceed full force with oral eating.

Sometimes I offer the choice between eating with a spoon or tube feeding. Once she even chose the bowl of food over the syringe because the syringe was empty. Makes sense. Empty syringe or bowl of food? Hmmm. No brainer. But this time I filled the syringe and had the container with food and a spoon, held them up and let her choose. What do you know. SHE CHOSE TO EAT WITH THE SPOON. After 10 or so large mouthfuls I sensed less interest and offered the choice again and this time she picked the syringe. It's so great that she clearly understand the choice that she is making. And even more exciting that as hungry as she was, given the choice she wanted to taste the food. How great is that!?

This video is from yesterday. The food was a little runny that day so it was harder for her to control. She isn't doing as well as she had earlier in the same day before I got out the camera but at least you get an idea of how she's doing.

May 14, 2008


Yesterday I had a really interesting experience. We had our final co-op preschool parent meeting last night and afterward went out for drinks as a group. I was remarking about how sad it is that this was the extent of my social life when once upon a time (pre-kids) I used to go out a lot. Not that I don't enjoy going out with the moms from preschool but aside from that I haven't been to a bar in who knows how long. The conversations often center around our kids and parenting issues. A couple of the moms were talking about what it might be like when our children start driving (very scary) someday. I was talking about how when I was in high school I would go out with my girlfriends dancing a lot of nights and there was often drinking and driving. I was not allowed to drive so I was never the driver but it's really scary for me to think of my own child doing things like that (Evie in particular) because it's so unsafe.

When I go out with the girls and start drinking I will often go outside for a cigarette (yes, yes I know). So I went out with one of the moms and we're standing outside the bar. A tall thin black man quickly comes up the hill in gigantic strides and asks us for a cigarette. He's wearing yellow raincoat and a floppy hat that covers some of his face but he's got a distinctive look and in those few seconds I realize with great surprise that it is a friend I used to go dancing with that I hadn't seen in almost 25 years! We catch up a bit and he is telling me how he's still striving to make it in the world as a fashion designer and that he's battled depression. I simply remark that life can be hard without elaborating. And I consider telling him about Ainsley but I don't because his life seems so different from the direction mine has taken and he's clearly fixated on his own struggles. But I've been thinking about it and wish I had. The chances of running into him in such a way are so unlikely. To think that all the stars had to align just perfectly for that to happen. We both had remarked that there must have been some reason for that to have happened. But what?

I think that in our society it's easy to get lost. We hope for fantastic things to happen and if our life turns out to be more ordinary than we hoped it can leave us with a sense of failure and even depression. Having Ainsley has required that I examine my own life and recognize that it is taking a different path than I would have ever imagined. But it is okay. Some paths are now closing for me but others are opening. And there is joy to be had no matter your circumstance. I hope it's not arrogant to hope that some people will read Ainsley's blog and realize that perhaps they can reexamine their own situation in life and find ways to be thankful for what they do have. I wish that I had shared it with him. Perhaps he wouldn't have gotten anything out of it but just maybe he would have. I gave him my phone number and hope that he will call and I will have another chance.

May 13, 2008

Ainsley's Hips Are In Place

She hates the x-rays.

...But always has so much fun playing with the mirror. This time she even "talked" to herself.
Friday we had an appointment with a very friendly orthopedic doc. Not with Dr. Song, the ortho surgeon, because he's out of the office and booked up for weeks following his return. The reason for the appointment is that Ainsley is still having issues with her right hip. The side that had the open reduction. We've been very concerned because it is taking so much longer to regain normal movement in that leg now that she's out of the brace during the days. And the leg looks about an inch longer. Obviously that had us concerned. They took an x-ray but had to redo it because it wasn't clear (Mostly because she can't straighten that darn leg.) so they had to do another. This was one time where a delay was convenient because Steve had to leave the appointment to pick up Adrian from preschool. He'd had a meltdown about being assigned to a group without any of his friends for a field trip. Steve was still able to get back to the hospital in time to hear what the doctor had to say while we were getting the second x-ray. So with her legs in a frog like position they were able to see that it looks like both hips are still in the sockets. Which is GREAT news especially given the asymmetry we're seeing. I did notice a difference in the bone compared with the presurgery x-rays. I hope we don't find there is a bone regrowth issue. He's going to review the x-ray with our regular doc and get back to us. Hopefully Dr. Song will agree with the ortho doc. Perhaps we might even be able to stop using the brace during sleeping earlier than expected.
Then Monday we had a special visit from a very experienced PT from Boyer. She worked with Ainsley for an hour and concluded by the end of the visit that her hamstring is okay and that the problem seems to be the hip abductor muscle. So she's going to instruct our regular PT how best to stretch it out. She is hopeful that once the muscle is relaxed that her legs will even out in length. And perhaps weight bearing in the future may help shape the hip socket.

So it's going to take some work but it's looking as if it's not a serious problem. We're so relieved that the hip isn't badly out of place which could have required another surgery down the road.

May 10, 2008

Mother's Lie

A Mom on the trach forum posted this in honor of Mother's Day. It's called Mother's Lie written by Lori Borgman. I think there is some truth in it for all mothers even those without a special needs child. We hope for so much for our children. The challenge is to have our hopes and yet accept them for who they really are. Good and bad.

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

May 7, 2008

Ainsley Drinking From a Bottle

Yesterday I was talking to Ainsley's speech therapist about how Ainsley's tongue has been moving so much more, especially when she's wearing the PMV. It's a curious thing and who knows why or what it means. I like to analyze things but even I get frustrated trying to figure it out. But it did lead to discussion of oral motor skills and feeding and the part that the tongue plays in both speech and eating. And got me thinking...

I've often wondered if it might make more sense to focus on bottle feeding before learning to use a sippy cup and eat baby food. I know society says that once a child reaches a certain age they should be using a cup. But is that more for our comfort or the ease of the child? The therapist has told me she's past the age of using a bottle. But I think a sippy cup is harder to draw from and requires stronger lip closure. And perhaps one must progress through the stages of eating because one skill builds upon another. That the bottle is easiest to control and mastery of that control is essential to moving to the next stage of being able to move food around in your mouth. Perhaps Ainsley has not been developmentally ready. She is only now just starting to be able to move her tongue around and I've recently learned that tongue "lateralization" is key to being able to move food around in your mouth. So it makes sense that if she was having trouble controlling the food that she would not do well. Perhaps as she makes gains with motor skills she will also do better with drinking and eating . So much is unknown about what she will be capable of because of her cerebellum.

So as a result of this conversation I decided to give the bottle a try again and she did surprisingly well. She was doing even better before I pulled out the camera, as often happens with kids, but I still got a little good video footage. I'm wondering if giving her practice with the bottle could help by giving her more opportunities to practice controlling fluid in her mouth and the timing required for swallowing. I think sucking from the bottle also might help her with tongue movement and controlling the urge to gag when the tongue raises in the back of the mouth. Water seems like the best choice since we know that as the swelling diminishes she will aspirate based on the FEES and swallow studies. So this was yesterday.

Today while I was trying to type this post I tried again. Today, not so hot with the bottle. Such is life with Ainsley. Confusing. Frustrating. Always changing. Never knowing what to expect.

May 3, 2008


This is an excerpt from a conversation moms were having on the trach forum. We often discuss how we feel about things well meaning people say to us. This time the subject was how people feel about when someone tells them they are expecting a miracle for their child. This is what I wrote:

Here is what Webster's says:
Miracle-An extraordinary event in the physical world which surpases all known human or natural powers and is ascribed to a supernatural cause(or work of God).

Based on that definition I do NOT believe that miracles occur. I believe that the fact that our children live and thrive is a testiment to the human spirit and advances in medicine. The doctors have been able to do amazing mind boggling things, but is it a miracle? No.

Some people when they are praying for a miracle are hoping for the Websters variety. An act of God or the supernatural that changes the reality of what is that cannot be explained by medical science or fact. Sorry but I think hoping for this kind of miracle is just foolish. The blind don't see and the paralyzed don't walk for reasons that do not have a medical foundation. I think that apparent medical miracles have a basis in science. Not to say that things can't improve dramatically or unexpected for reasons we can't see or understand.

Quote: "God only gives you what you can handle" or "God gave you her because you're such a strong person". Please. Is that supposed to mean we got the shaft because we're strong, because we could handle it? Ugh. I love my daughter more than anything, but I refuse to believe that there is some higher purpose to her being born into our family.

I don't like or believe that either. Bad things happen to good people. Good things happen to bad people. There is good and bad in everything. People ARE sometimes given more than they can handle in life. There are sad sad cases of parents murdering their children and or committing suicide. We are strong. But we are also weak.

And it is not a blessing to a child to be born with birth defects (for lack of a better term). Can they rise above it and be even more amazing? Yes. But if it was so great to have a trach or have medical conditions to build character we would want that for all the worlds children. Ridiculous. To believe that what they suffer through was given by God as some sort of teaching lesson for them or myself would only make me believe in a God that is cruel. And I don't believe that.

Here's a link to the whole thread if you are interested in reading the varied opinions of moms with special needs children and what they think about hoping for a miracle.

May 2, 2008

I Was Thinking.....

About vomit. Yes I know. Gross.

Why am I thinking about vomit? Because Ainsley's been sick and thrown up a few times in the last couple days and a few people who were there at the time have been surprised at how I "know" when it's going to happen, so its been on my mind. Not that this is new. I can't tell you how many therapists, doctors and regular people have asked me how I know. And it IS uncanny that I can tell. It can be the look on her face, the way she moves her tongue, the way she coughs, or even the way she holds her breath. 5% of the time she gets sick when I think she won't, another 5% of the time she doesn't get sick when I think she will, but 90% of the time I know. How do I know? Is it mommy intuition? Or is it experience? Steve is not a very good judge and he's seen her throw up countless times. I was trying to figure out how many hours of my life have I spent now watching her to see what's going to happen. How many hours suctioning and praying that it wouldn't cause her to vomit? I'd estimate it's about 4,000 times I've suctioned her and watched to see if it was going to cause her to vomit. I'd estimate about 800 times I've seen her throw up. It's a little bit like having a child with the flu that never goes away. One of the moms on the trach forum was saying last week how she lost it over her son vomiting after she's worked so hard to give him a feeding, and I SO totally could relate.

I can't explain what its like to see your child explode like a volcano and vomit their entire feeding up into their face and watch their panic as the thickened curdled milk covers their eyes, nose and spills into their trach like lava. Seeing them thrash back and forth trying not to drown in it. It all happens within a second or two but like a car crash everything seems to be in slow motion and last for minutes. Even if Ainsley never threw up ever again I know I will never get that image out of my head. The feelings of being totally helpless and frustrated. The despair that on a bad day hits you in seconds that can be so overpowering that you scream before you can think twice about whether the neighbors can hear you. I don't think you could get it unless you have a medically complex child that is a chronic vomiter.

So when it seems that Ainsley has stopped vomiting you can imagine how thrilled I am. But I'm hesitant and afraid to do anything differently should it return. I'm a prisoner to the threat of vomit. And so the last few days have brought back all the bad memories.

Ainsley had an unexpected low-grade fever Wednesday and I suspected an ear infection, since no one else in the family was sick. I scheduled a doctor appointment late Wednesday for the following morning. In the morning it became clear that despite being virtually isolated she had somehow caught a cold but it was too late to cancel the appointment so I took her in anyway. The right ear was a little red but we held off on antibiotics, and her lungs were clear. Later in the day she still had a low-grade fever but by night her heart rate was up in the 190 range and at 2am her temperature hit 103.3 on Motrin. Even after I spent half an hour sponging her head with a wet washcloth, put her on oxygen to try to bring up her sats and bring her heartrate down she still woke up needed suctioning a few times after that. It was already 1am when I went to bed because I was working on a photo project I'd planning on bringing to the preschool so I didn't get much sleep. I'd committed to work at the preschool and was even looking forward to it. Every few weeks I think "how bad can it be" and work up the nerve to give it another try. Every time I'm reduced to a blubbery pile of tears at some point in the day but I guess I'm slow to learn. At least today it was at the end of the day not before I even left the house. Since at 8:30 her temperature was totally normal I got ready to go but once she woke up it started to climb again. Still, I figured she can sleep while I filled in as a working parent and she'll just lay in the stroller or on the blanket so she shouldn't get anyone sick. The day goes pretty well. I'm even able to juggle taking photos for the school in between suctioning and tube feeding. Fine, that is, until Adrian refuses to join the class in the lunchroom because he couldn't sit next to his best friend. I'm trying to take pictures of lunch for the teacher and frustrated that my son is causing a scene. Eventually that is resolved when a spot opens up and he can sit where he wanted. Then I'm inside to clean the bathrooms and floors (chalk pounding day) and suctioning Ainsley after she was awoken from napping in the stroller to find she's coughed so much today that she's started to bleed(trace amounts) when the teacher comes in to tell me Adrian is now refusing to come in from the playground. Apparently because he wanted to blow bubbles with the giant bubble wand right when they were being put away. I pick up Ainsley because she can't be left alone and sling the suction machine over my shoulder and run outside to try to help get Adrian in. He's screaming, crying and running from me. Whichever way I run he runs the opposite and carrying Ainsley I can't possibly catch him so all I can do is yell to try to get him to come to me so we can talk. Then he can't even hear a word I say because he is screaming in my ear to leave him alone. All the while I am desperately trying to calm down my four year old who is physically resisting me while balancing my child who is as big as a two year old and as floppy as a baby on my hip while I'm crouched down without falling on my ass. Finally we get him in but he is still crying and screaming and disrupting circle time. Ainsley has to be suctioned because of all the jostling and she throws up. Carrying my sick child and a cup of vomit (thankfully just a little this time) I sit in the corner and cry along with Adrian who is REALLY sad because on top of not getting to do the bubbles and getting in trouble he's now missed hearing the story at circle time and sharing the book he brought from home. I put my arm around his shoulder to comfort myself as much as him. I wonder if things will ever be the way that they were before...Ainsley. Its hard to say that because I love her. Even though things are so much easier than they were that first year when they go wrong it still all feels like too much. I hope that someday things really will be easier, like they were before, still hard like parenting is but not like this where I feel like every day is a test that I'm failing.