Tuesday, March 25, 2014

let's get physical

Calder seems huge! It’s not like he’s grown exponentially since my last post, but since I see him every day, I don’t think I notice his growth as much as the next person. Today when I was feeding him I looked down and literally exclaimed at his size; I told him he was so big he actually sitting on my lap, and that when he was born he was probably barely the size of his own leg.

Last week we participated in our first visit with the follow-up clinic at Inova Fairfax. When we were discharged it was explained to us that information gleaned from this visit would be used both for a study of NICU babies as well as to give us suggestions on what to do to aid in Calder’s development. Since Calder already had seen a physiatrist at Children’s National since discharge and has another appointment coming up there, and since he sees a physical therapist on a weekly basis, we did not feel a huge need to attend. But given our day jobs (monitoring and evaluation), we have a penchant for research, and so we were happy to make the drive to Fairfax to be part of a longitudinal study. During our NICU stay we oftentimes asked to see studies to help inform our decisions regarding specific treatments, but we were told in many cases such studies did not exist. 

The therapist had me hold Calder in my lap at a table and reach for toys of various colors and shapes while the doctor observed. She dropped a rubber ducky on purpose to see whether he’d follow it with his eyes. She made noises behind him on the right and left to see whether he’d turned toward the sounds. Even though they’d told me everything had been sterilized, including the table, it was hard for me to watch him shoving every block, string and ring into his mouth when I knew other babies had done the same thing. Ahh! NICU-Mom paranoia. Next we lay down on a mat, where they observed him on his back, his side, his tummy, watched whether he could roll over, etc.

yes, i CAN touch my toes and it is FUN
I have no idea what he scored or whether there even was a score. But the doctor said he looked great, and she gave us a few tips. She said to stay away from certain playthings, specifically jumpers. Her opinion differed a bit from our current PT, who says that equipment doesn’t help baby but doesn’t really harm him either; this doctor told us that preemies are predisposed to toe-walking, and that using a jumper or similar walking/jumping device might further encourage that behavior. So we’ll skip those. She gave us suggestions for what to work on next (have him reaching for objects to either side of his face from a seated position) and stressed that we should continue to work on everything from both sides, not to favor one side or the other. When he makes sounds, we should repeat them back to him, but when he makes vowel sounds, we should repeat them back, though with a consonant.

Not too long ago another Fairfax NICU mom emailed the rest of us asking about helmets. I hadn’t given it much thought until this point. The nurses had paid attention to turning his head from side to side while he was in the NICU, and our pediatrician seemed pleased with the shape at his first visit. One of the moms responded with photos of her child in a helmet (total cutie!), and others noted that they were considering it. After any medical concerns were ruled out, they said, there were still cosmetic concerns, mostly on account of possible bullying in school. Perhaps it seems a long ways out to be worrying about something like that, but the specialists told them the head shape could be corrected now, with a helmet, over a span of 3-4 months, while it would self-correct over a span of 18 years. Since then, I’ve consulted with our PT as well as the PT and physiatrist we saw at the follow up clinic, all of whom looked at me like I was nuts to even consider it. Sounds like we have lucked out in the head-shape department!

Tuesday, March 18, 2014

what's so funny?

Calder got his second-to-last dose of Synagis shots over the weekend. Thank goodness we are almost done with these! As I've mentioned before, they are dosed by weight, so as he grows, so does the amount of the injection. He now needs two huge shots per dose, usually one in each thigh, and by two nurses simultaneously, if there are enough nurses around. Better to get it all done at the same time seems to be the philosophy, but I don't think Calder is buying it.

Two Irishmen, both got kisses.

There were no parades in our program for St. Paddy's this year, but we celebrated to the best of our abilities at home. Which mostly meant wearing green and eating some cabbage. :)

Thankfully, and finally, we have had a few nice days, so we took advantage of one by jogging down as a family to the Yards Park Capital Hill Waterfront, which has some cool naval ships, green space and other stuff, to areas where there weren't many people. It was one of Kraemer's days off, so it was pretty empty anyhow. I wish I'd remembered my camera. Calder has been doing well during the day without the oxygen so we kept the load light and left the tank at home. He wasn't sure at first what to make of our pace, especially since it was the first time we put him in the stroller without his car seat, but he took it in stride. For at least the first 25 minutes.

Most exciting though was Calder's first laugh, a few days ago, right after my last post. Or we're calling it that anyway -- you can judge for yourself because we caught it on video! Just barely, right at the beginning. Our little boy is all smiles [allllmost] all the time, but when he'd get REALLY happy, all he could manage was a cry. Talk about confusing for all parties involved. Here, he finally made it over the hump.

Thursday, March 13, 2014

less oxygen, more bottle, please!

can't a man rest in peace? always a camera in my face!
resignation? or contentment? :)
At PT this past week we continued to work on rolling over – he comes close but still needs an extra push to get over the hump. This is progress! She is also helping him know how to sit up by rolling him up on his arm and is helping him along with crawling; right now he is doing some kind of backward scoot, pushing his legs as if to stand up, but his arms hadn’t quite gotten the message, which somehow propels him the opposite of the way he wants to go. Cristiane would let him push off her arm with his legs and then gently move his arms forward to clear the way. Whatever we’re practicing, he always amuses her with his antics. Last week he had her in stitches at his attempts at talking (clips below!), while this week he had her entertained with his endless energy. Taking a break isn't part of his lingo. Whenever Cristiane encourages it, he doubles his kicking speed.

Our pulmonologist says we can start to wean Calder off the Os by giving him periods of no oxygen. We have already been doing this at times during the day, mostly because it had become impossible to carry him around with a tank constantly. Thankfully, though, our tanks have dwindled in size and thus weight as we have discovered that mini tanks are an option (they sent some by accident once, thank goodness), so I do oftentimes place him in the Ergo and off we go. And by that I mean, off we go around the house for a short stint. We are going to start trialing him at night without the oxygen, too, and see how he’s satting. I’ve been watching him on our video monitor for the last several minutes tonight, and although he dipped as low as 93 for a brief second, I saw him as high as 99. He seems to be averaging about 96. It’s fun to see him without the cannula on his little face. Kraemer thinks it’s permanently deforming his nostril. Whether that’s true or not, we’re all anxious to say goodbye to the equipment.

At his appointments this week, Calder weighed in at 15 lbs 11 oz and measured 61 centimeters. Apparently, using his adjusted age on the regular chart, this puts him in the 48th percentile for weight but only the 5th percentile for length. Ginny called him a little Churchill. I’d told her that he has been regressing on his bottle volume, going from progressing from 1 oz to 2 oz to as much as 4 oz one time back to 1 or 2 oz, max. She agreed that it’s probably because, well, he isn’t hungry! We all want him to take the bottle, so she said to encourage him to do so, we’ll cut back his feeds a little bit (she also caveated that with, we’ll see what pulm says about this – they like them fat because they say they need those reserves to grow their lungs!) We currently feed him 150 oz at each feed, 6 times a day, prefacing one feed with a breastfeeding session (if he’s in the mood, and lately, not being hungry, he’s not), but now we’re going to feed him 150 oz only five times a day and make that sixth time solely breastfeeding. We hope this means he’ll be hungrier. If this works (as in, he seems to be taking to the bottle more) and he still meets his weight target in two to three weeks, we’ll drop another 150 oz feed and replace it with breastfeeding. If he doesn’t seem to like it, well, I guess it’s back to the drawing board. She told us that once he gets to the point where he takes everything orally for two months, we can have the G-tube removed. This target might be a little ways off but it’s sure nice to know what we’re shooting for!

Saturday, March 8, 2014

Well Worn Genes

Friends and family have been speculating about who Calder resembles really since he was about a week old, which you could say might have been just a little bit too early to mean anything. But now that his features are a bit more developed, we've had a lot of fun with baby photos. What do you think?

Kraemer's Mom, Gretchen
Sweetie Pie

Taryn's Dad, Bruce

Taryn (not the one with the 'stache)
our little cutie

Thursday, March 6, 2014

yackety yack

Calder is, decidedly, super fun (most of the time - I don't want you thinking that just because I don't post videos of him wailing that he does not wail!) He is starting to make sounds other than crying and cooing – he enjoys shouting (fantastic) and growling. He now buzzes his lips and his tongue, like he's going for a "b" sound or a "th" sound. Corinne said this is a positive development, and Calder seems to think so, too. He is usually quite pleased with himself when he does this.

He was also quite pleased with his visitor this week! Nurse Laura came by to say hello and to help me out by picking up a couple things we put together as thank yous for our primary nurses at the NICU. He was a much chunkier Lovey than the last time they'd hung out! Doing as the Inova Fairfax NICU had taught me, I asked her to only come if she weren't sick, hadn't been sick, hadn't been around sick people, yada, yada, yada. Of course, I knew it was unnecessary to tell her this, but the crazy NICU-mommy in me couldn't help it. She kindly replied something along the lines of, she would not dream of getting within 500 ft of Calder if she had even the teensiest sniffle. In fact, she'd already warned me against coming to the hospital to drop off the bags since they'd had a pretty nasty flu season. At any rate, Calder was SO happy to see his old friend.

In other, more mundane, yet cause-for-celebration, news, I learned we were approved for Medicaid through the Katie Beckett waiver program, which, most importantly, should mean we will now be able to get Calder an in-home nurse through this program. Thank heavens. It’s a long story that I don’t care to document here or bore you with, but after calling some recommended nursing outfits previously, I’d learned that a) Calder required a “skilled nurse” and b) no one was interested in talking to me until Medicaid cleared, even when I asked them for quotes in the event we were paying privately. Or at least that’s what I gathered from the lack of callbacks. There are still a couple other hiccups with Medicaid we’re working on fixing, and I won’t really be able to celebrate until the nurse is on our doorstep, but overall, this is progress. I am ecstatic to be able to check this off my list and move onto more fun things. Like hanging out with Calder. 

Cincinnati: Where Everyone
Enjoys a Juicy 3-Way!
Who picked this shirt??

i break for photo shoots!
These last couple weeks have already been easier on me than most because last time my parents were in town several weeks ago, my mom brought us so many frozen meals that we’re still eating them. (They've all been scrumptious, Mom, I’ll eat your cooking anytime!) Emily also went out of her way while visiting her sister to bring us some delicious dairy-free meatballs, complete with LaRosa’s sauce and hoagies; as a Cincinnatian, I grinned proudly when Kraemer devoured them. Our friends from Social Impact brought us a big care package of delicious pre-made meals several weeks back that simplified my life and tasted yummy, and a sweet friend we met while living in Mozambique (small world --- or international travelers tend to live in DC) brought us some fantastic chili and cornbread (yum, I haven’t had cornbread in forever, given my dairy situation.) Over the months we have been blessed with so many kind words, meals, cards, etc. I know I've mentioned it before here but I just cannot say it enough, how grateful we are to have such caring friends and family in our lives.