Friday, May 07, 2010

Days 4, 5, 6, 7, and 8

*I was going to post this yesterday (we are on Day #9 today and I have more to update) but I was just desperate to get some sleep. I will try to post the results from our Feeding Clinic Family/Team review meeting and all the subsequent changes we're making tomorrow.

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Yeah, it’s turned out to be more difficult to blog because I don’t have access to Blogger at the hospital because it’s a social networking site and all of those are blocked. What I am trying to do is type in Word and then copy and paste into blogger so that I’m keeping on track with my goal to blog about the experience.

In a nutshell the boys are doing well. The days are very long and they, and I, are exhausted. The commute is what makes the day so difficult because it is exactly an hours drive one way with little to no traffic, assuming that I leave by 6:45am. The commute home is worse and usually takes about an hour and a half, so as soon as the boys are done their snack therapy session I try to hit the road at 4pm or earlier.

There is also way too much stimulation for the boys all the time. They are not used to playing so hard all day long, interacting with so many kinds for so long, and then there are the demands of the therapists to eat which causes some pretty high anxiety. By Tuesday this week we decided to change their lunch from 11:30am (what we do at home) to 10:45am because they were falling asleep in the middle of or even before the lunch began. This has helped but only a little. Part of the issue is that they have a behavior of knowing that they can’t get down from their highchair, they don’t want to eat, they are already so exhausted and stressed, that the only thing they can do to refuse to eat is turn their heads to the side and close their eyes until they sleep. The therapists do everything in their power to give them toys to distract, be very animated and positive, but when you are done - you are done.

As of Monday Cameron has been happily chowing down on multiple pieces of Gerber Cheddar Cheese puffs. This is not really new news because he’s been eating as many as two or three a day before we stared the clinic. But now he can eat as many as 7 or 8 at a sitting and still drink a couple of ounces of milk in a sitting. He’s also discovered that he likes Cheerie Os and ate 5 for the therapist, then asked her “More Chee-o’s peese.” and ate 5 more for a grand total of 10. This is FABULOUS and more than he’s ever willingly eaten for me so it’s more amazing that he did it for the therapist. He’s also in love with Campbell’s Chicken and Stars soup and will happily attempt to scoop up to 4 or 5 baby spoons full with not just the broth (which is what he really loves) but the stars. On one occasion he picked a piece of carrot out of his spoon and I thought he would throw it on the floor but instead he popped it in his mouth, chewed and swallowed. He has refused any carrots since then. But he does love the soup and loves to watch me for a reaction which must be withheld until he’s successfully gotten some noodle stars in his mouth and he’s chewing them. Otherwise he thinks, “Oh, I got the spoon to my lips and she’s cheering, I’m done.” Cameron is not willing to eat everything, and not every session, but he’s very happy to play with the food and I am happy with that too. It’s not all sunshine and roses with him though, he’s still trying to refuse and really does not want to be fed, but will occasionally self feed a tiny bit. He’s like a Master Sensei and can swat your hand and spoon without even taking his eyes off the toy he’s playing with. The saddest part is that he will often say “I crying. All done.“ or “Find Evan, Eban stuck, find him, where is he?“ of “Mommy, Mommy Daddy, Mommy, Mommy” over and over. And he will do his best to swipe everything off the tray table often when he’s angry. But he does also tell them and us that he’s hungry now and will eat or drink something. Overall he’s doing exactly what we had hoped he would do in the first week.

Evan is not doing well. He’s over stimulated, over tired, over stressed, over anxious, over everything. But he loves the playroom and playing with his new friends (though at this age they don’t really play with people, they just play near people.) He is refusing everything and anything they offer him to eat regardless of the praise and distraction. He’s refusing the formula milk that they offer, I suspect because he just doesn’t like it. He drinks more 2% milk at home than he would drink this stuff. Today they will start switching him to Carnation Instant Breakfast Whole Milk because it has more calories and nutrients in hopes that he will like that taste better. He’s always stressed during the therapist feeding sessions, yawning, falling asleep, wiping his face and eyes, putting his hands in his hair and rubbing his head, or covering his eyes with his arm or palms of his hands to hide from the therapist. But the therapists are pleased because he’s not acting out in other more difficult and unpleasant ways.

You might be wondering what difficult and unpleasant ways they are referring to. I have seen some of the other kids throw food really hard, grab utensils to hit with, and cry non-stop hysterically until they are let out of the chair. And then there is little V. She’s a cute little girl, maybe a year older than the boys, she doesn’t speak and can eat food just fine but refuses. She screams a hideous scream like the character Banshee from the movie X Men. Its piercing, shrill, makes nails scraping down a chalkboard sound pleasant, and she can make it go on and on and on. She does this before and after every single bite of food, and it’s not like she’s getting slop, she’s got Lucky Charms, some Go-gurt yogurt, and a grilled cheese sandwich. I have seen that with her it’s truly the worst case of a power struggle of any kind. She is also manipulative and will try to distract herself and the therapists from the task of eating food. This is another good reason why the feeding sessions are done one on one with no other kids around to witness the behavior aspect.

The boys weights are slowly going down, but we are not concerned as it’s very slowly and we can chalk that up to the increased vomiting we’re seeing especially at night, and all the extra activity they are getting all day long.

Cameron: Day 1 (Tuesday) = 12.05 kilos, Day 4 (Friday) = 11.95kilos, Day 5 (Monday) = 11.85,

Evan: Day 1 (Tuesday = 10.8 kilos, Day 4 (Friday) = 10.8 kilos, Day 5 (Monday) = 10.95 kilos,

I am meeting some of the other parents of kids in the program, but it is awkward since you don’t want to invade their privacy but it’s nice to have a Parent Peer to talk to, someone who’s there doing the same thing you are in the same program. I spend a lot of time sitting in small dark observation rooms and in the large hospital waiting room with super uncomfortable chairs and a tv with bad reception and terrible programming. I have joined a gym to give me something to do and am taking at least one class during the morning, or one class or workout session in the afternoon. I had not realized how out of shape I really am. I jiggle in places that never did that before. I feel the strength in my body from having two babies and having to carry them and all their gear and double stroller, etc. But those are totally different muscles used other than the ones you use to work out. Seriously! It feels like I use different muscles and the ones that I use to run or bike or lift weights or do yoga are not at all used for caring for kids and so they are in pain from the gym.

But when I’m not observing the boys refusal to eat, or trying to pay homage to my former svelte 21 year old body by torturing myself into thinking I will one day be that shape again, or wandering around the Mt. Washington area eating the delicious food that I would otherwise not eat at home, I am sitting in a lobby waiting room chair typing on my laptop and chatting with parents who are bored to death while waiting for their kids to go through some kind of therapy.

(Warning: DO NOT read any further if you are feeling sad or just don’t need the Debbie Downer I’m about to give. I promise this next part will be sad. I did type this up a couple of days ago when I was feeling particularly exhausted and down in the dumps.)

Every day I come here to this hospital I am reminded how lucky I am and how easy these last two years really have been for me. Every where I look there are so many kids with far far FAR worse issues than what we have going on and I remind myself that I'm not worthy to sit with these parents and bitch and moan about our issues. If my boys don't eat, THAT'S OKAY. I can still feed them through a tube and they can lead otherwise normal and productive lives. In the grand scheme of things, the whole eating process can be viewed by many people (my husband included) as overrated.

Right now I'm sitting next to a father and son of about 6 years old. I have not spoken to them yet but I am watching them interact and keeping him busy. It is obvious that he has had brain surgery, that by the odd and over-pronounced shape of his head and face he has a genetic defect that is rare and beyond the Down Syndrome and Autism that he has. He has a spinal or orthopedic problem that he walks like he has a rod in his leg keeping it straight (he's wearing swim shorts, I don't see a brace of any kind) and moves like an old man with horrible arthritis. They are having a good time just playing on the floor together while waiting for his one hour hydro therapy session. It took five minutes for the little boy to sit on the floor by his own choice.

On the other side is a mother who's 5 year old daughter is an angel coloring at the kiddie table while her 9 year old Autistic brother is terrorizing the waiting area, shrieking like he's in abject terror and begging his mother to go home. He does not want to go to his sensory and PT therapy sessions. He is begging, pleading, hitting, and pushing his mother, the furniture, the wall, the vending machine. His mother has apologized a thousand times for his behavior.

Next to the little girl is a partially blind and Autistic boy who is 7. I met him and his mother yesterday. He is sitting to "read" a fabric baby touch and feel book that is worn thin, his lovey. Then he gets up and spins in circles to the left so fast that I'm getting dizzy and can't even look in his direction. He is waiting for his twice weekly feeding therapy because he only eats stage 2 purees and does not know how to bite or chew, but has stranger anxiety and needs strict routine and familiarity with his therapist, so he will be entering the program we are in the last week of our stay here.

On the other side of the lobby is an older man with his daughter who at the time I was sure had epilepsy and CP and some other issues stemming from these conditions, but after chatting with them learned that she was shot in a drive by when she was 9 years old and the bullet is still lodged in the base of her skull. He shared with me that 9mos ago she was caught in a drive by on the corner of their street in Baltimore. She still has the bullet lodged at the base of her skull. Nine months ago she could not see or hear, walk, talk, eat or breathe on her own. Today she is practicing hydro therapy by walking with a cane in the pool. She is getting her G tube out next month. She can see the tv and talk some basic words. The epileptic seizures it appears she's having they aren't sure are all seizures now, but mostly nerves reconnecting or attempting to, though they won't know for a very long time. Modern science is a wondrous thing. She's waiting for her PT session sitting in her chair drooling and watching the news.

Then at the far and of the waiting area is a lady with a triplet stroller and two infants in the stroller. I think that she is the grandmother, but not sure. I have not seen them here before, but the third infant is in an evaluation session for several services including feeding therapy because they've been sitting here for well over an hour. The two babies here are maybe about 9 or 10mos old and are AMAZINGLY behaved, sweet and very quiet sitting in the lobby reading board books in their stroller.

Then in the hallway is a little boy about 6years old who speaks no English, only Spanish and has classical Hispanic very tan coloring with a big beautiful smile and he is laughing. I know he has had a brain surgery (huge scars on his head) and I suspect was in an awful accident because he has Halo scars on his forehead and back of his head meaning that he had a traumatic neck injury. His face is raw and red all over the forehead, along the hairline and his ears and parts of his neck. I think that he has a skin condition or reaction, or they are some really well healed scars from a burn. He also has major motor skill problems but can walk in short bursts with help from a walker. He's working with a therapist to pick up a ball and throw and kick it up and down the hallway, and it is the highlight of his morning.

Sitting here I feel like we almost don't "belong" if you know what I mean. My kids are healthy and now can run, could self feed if they weren't afraid to do so and didn't vomit buckets every day, and are becoming more and more socially well developed and learning to talk. This hospital is mostly for children with major medical issues and the therapy required for their treatment. There is also a level III NICU here and I regularly see babies being transported in and out in ambulances. This I was not expecting to see. Every time I see it my skin crawls, I want to burst into tears.

And then there are the staff that work here, every one of whom I’ve come in contact with, seen in passing in the hallway is super nice and friendly and really wonderful with all the kids. They are saints because it takes a great strength to work here with these kids every day. The patience that all the feeding clinic staff have shown to this kids is brilliant and even in the difficult cases like little screaming V, they may get personally frustrated, but it’s never with the kids and I have never seen it in their faces or actions. That is the beauty of a program like this, because we parents have so much time and emotion and fear invested in our kids, we get stuck in ruts, we do everything we can though we’re not experts, we are exhausted. The team here has that luxury of being one step back. But I never get the feeling that they are here to just do a job. I feel like they genuinely care about how the boys are doing and what they are achieving no matter how small it is. They will try and try and try and try where I might have said enough’s enough about two tries back. There is even a weekly therapy dog named Katie Bell, a Pomeranian mix mutt, who comes to the lobby and lets all the kids play with her and I got to cuddle her a bit too. Felt nice.

Today we have our first Family / Team meeting where we discuss how the last week has been, what issues and successes we’ve got, and what our next steps will be. The doctors and lead therapists assigned to the boys will make changes to the behavior and feeding protocol and ask for our input too. I will probably do a separate post on this meeting, but it should be short, I think.

In the mean time, I will watch the boy spinning and Jerry Springer on the tv for a bit before watching the boys eat again.


Annie and Jason said...

I have so much hope for you guys. I need to know little Evan can do this. He's always reminded me of Jax.

I'm so proud of you Laura - you are amazing and deserve the biggest hugs for Mother's Day. I adore you - hang in there, and keep it up.

Trish said...

ack! Tears all over here.
Still thinking of you guys!

Valerie said...

If it makes you feel a little better...the babies being transported into the NICU there have been transfered from the Level IV NICU @ Hopkins. They are showing progress and no longer need the maximum level of support.

Blue Moon Mama said...

I am so glad to read about Cam's progress. I feel sad about Evan being so stressed out. :-(

And the other stories are heart-wrenching. I had to read 100 Medical Assistance cases at work to redact the confidential info, and I've never spent a more depressing three weeks of work!!! Mental illness, poverty, sad. But sometimes, a good dose of perspective.

Trish said...

Ugh, Valerie, that actually makes me cry more!
We were very fortunate that we were able to stay in one hospital the whole time, but I've had other preemie mom friends have their kids transferred around and that's so hard on the families.

Even seeing less-premature preemies makes me cringe. After having seen all the complications that can come from prematurity, it's like seeing all of these months (and years!) of stress & worry rolling down the hall in a plastic box.

It's probably one of those things you just can't understand if you've never lived it. Once you've been part of this awful club, you really, truly wish that no one else would EVER, EVER, EVER join it.

wrensmommy said...

i'm sorry that you are going through this... i can't imagine how hard it is.

it's great that they're doing well though....(even with evan's stress- it seems like progress) and to know how healthy they are when you look around.... my heart hurts for those other families and the hardship that they're facing. (ditto blue moon mama... perspective. *sigh*)

i agree with trish on the nicu experience... it is so hard to go through... and your heart breaks for the families that are there. the nicu is a rollercoaster ride- and a terrifying one... one day your baby is doing better, even taking milk, the next day there's an infection and she's back on the vent. and up until the point that we physically walked out the door, there was always that chance that she would never leave... and her whole life would have been spent in that frickin' place. even after the vent was gone we still had breathing issues, reflux, and most have feeding issues (of course, we know evan and cameron are dealing with this), and then comes all the PT/OT, maybe speech therapy later... my daughter came home on oxygen and was on it until she was about 7 months old.
a step in the right direction is WONDERFUL... but a step down NICU is still an amazingly hard place to be. as preemie parents we know that they aren't out of the woods yet, and that they're just beginning the rest of the journey. (a rewarding, awesome, and spectacular journey- but a hard one as well.)