So, what we learned from the bronchoscope: very little. In fact, the night of said procedure I was talking to Andrew and just wanted to make sure that I wasn’t missing anything.
“So, it’s not just me, we didn’t really learn anything today, right? And we’re not doing anything different, right?”
Andrew, “Yup. That’s what I got.”
Coraline has some redness due to her acid reflux. We’re hoping the Prevacid starts to allow her to heal some now. She also has these tiny little nodules that are not uncommon in babies that have been on a vent for so long. Both issues should resolve themselves.
The process of getting the procedure done went smoothly and Coraline did great. I do hear that she was not the happiest camper while they were doing it, but she seemed to get over it as soon as she got back into the room with us. She had no side effects except maybe a little coughier than normal for a day. No biggie.
Coraline in her super adorable surgery gown garb. She was a happy camper at Riley.
We have our next pulmonologist appointment in the end of September. So no changes till then, at least. (sigh)
Although, I will say that I am glad it’s not a situation where she needs to have surgery or something else really bad. Every once in awhile I see stories about kids who are way worse off. Some who have trachs, some who got NEC and now have long-term damage, and some who never make it home. So I try to remind myself that the inconvenience of an oxygen line is just that, an inconvenience.
New Coraline tricks
We’re trying out solids! Coraline has been taking rice cereal in her bottles for awhile to try and keep some of her milk down with her reflux. It honestly doesn’t really help. So we’re graduating to oat cereal with a spoon! We tried for the first time yesterday and she seemed pretty into it! She at least didn’t spit out all of it. So better than I expected.
She’s all, “What is that in your hand? What is all this nonsense about?”
“So I just put this thing in my mouth? AWESOME! I love putting things in my mouth!”
“nom nom nom”
She is not taking as much in a bottle as I would like her to still, but we’re on our way up. Once again, bronchoscopy day threw her off schedule and it’s been a struggle getting back. She does NOT do well off schedule.
She is a rolling over fool. Unfortunately this means that she stays on her belly for like…2 minutes when we have tummy time and then she just rolls herself over. It’s frustrating because her arms are not super strong and she just has no desire to get them to where they need to be for crawling.
“Look how I can hold myself up!”
20 seconds later… “Eh, I’m getting a little tired of this.”
10 seconds later…”Yes…this is perfect.”
Andrew suggested we try her using her boppy more for support. This is definitely amusing, but doesn’t really help the issue. She sort of flops herself over the thing till she’s in a super awkward position on her side…and just lays there.
“What’s up turtle-friend?”
She is becoming a lazy thumbsucker. She isn’t really committed to it though. She still cares very little for a pacifier.
We’re going to have to get her sorted out with sleeping in a crib soon. Her rock and play is starting to annoy her and she tries to climb out.
The reflux has gotten way better but she is still puking a bit, especially when she works herself up into a tizzy.
The dog…still her favorite thing in the house. But I DID manage to make her laugh on my own once this week. It was the first time without the dog’s help.
In other news…
Yay for me! I got a part-time evening job so that I can continue to stay home during the day but not be a complete drag on the family finances. I will be working at School on Wheels, as a program coordinator. It’s a non-profit that works to tutor homeless students. I’ll be working at the Dayspring Center downtown. So excited! It’s a great organization and I’m really happy to be able to pay my student loans and car payments.
Also…and this is completely off-topic, but I’m so excited about it…I got a summons for jury duty! FINALLY! So the day after my last day of training for my new job I will potentially be on a jury.
And for your viewing pleasure…some cute pictures. This outfit came from one of her nurses in the NICU and it’s fitting her perfectly right now so we HAD to put it on her.
Hoping Dad saves her from this stupid camera. No such luck, kid.
Coraline did her sleep study, a traumatic event for all of us. It did make me appreciate that this child can have a real absolute meltdown and she has yet to have done that at home. It can be really bad. And in this case it was bad for a reason. That poor kid had about 50 wires coming off of her from her head to her feet. She was then completely wrapped up to keep all the wires in place. Then her arms were restrained to keep her from tugging at them.
Poor poor baby. This was after she cried herself to sleep. Saddest baby ever.
I’ve also learned that once she is asleep like this, waking her up, even to feed her….bad idea. Just let her sleep. Bad idea. For everyone. Ugh.
Anyway, I won’t go into the detail of the sleep study, but if you ever find yourself in the position of needing one, or staying with someone who needs one, I have just one piece of advice. Wear warm clothes. And socks.
We were hoping to have this sleep study and be done with it. But no. We get a call from the doctor’s office.
“Well the sleep study showed us that she has some sort of obstruction in the airway. Most of the time it’s just what we call Floppy Airway and they grow out of it, but we have to make sure. So Coraline needs to come in for a bronchoscopy.”
Great! So she gets to go in and have a camera go in through her nose and down her airway. I can’t WAIT! So we are doing that tomorrow morning at 6:30am.
Other than that, she has generally been doing very well for the past few days…
The Prevacid seems to be kicking in.
Her volumes have been getting higher throughout the week. She had about 20 oz yesterday, which is really high for her.
She gained only 2 oz this week, but we are not surprised with the reflux issues and the trauma and all the doctors appts. Her eating schedule was all out of whack.
I do think she is getting a little tired of her Rock and Play which is what she had been sleeping in, to keep her elevated. It seems like it might be about time to head to the crib.
She’s been sleeping like a champ and we’ve started letting her sleep longer stretches before waking to eat. She’s doing pretty well with it.
I am starting her on baby oat cereal this week. She will be 5 mos adjusted. And I am eager to see what she does.
We have not been able to give her Poly Vi-Sol regularly for weeks. She literally throws it up every single time now, no matter how we give it to her. In her milk, shot in her mouth, in the tub, on an empty stomach. And not just spit up. Violent scary puking…all over. So if she’s eaten anything…it is just gone. The doctor suggested masking it with food if we’d started on solids yet. That is one reason I am going to try the oats this week.
She now tries to eat her feet. She can definitely get them in her mouth. It’s pretty gross.
She is really smiley…and STILL the only thing that can make her hardy-har-har laugh is the dog. She wants to be friends SO bad.
As for house stuff, I haven’t written much about that lately…
But we have made some recent changes and done some work. The kitchen nook has been cleaned out and is now being used for its INTENDED use for the first time since we’ve moved in (8 years ago). In fact, I am sitting in it right now, enjoying a coffee. I actually had my breakfast in it! We also got a high chair that would fit in here…and folds up to make even more space. So I can sit in here and have lunch while Coraline plays with her high chair toys. Hurray!
Loving on her toys.
My goal for this week is to finish painting the doors for the storage in the baby’s room….finally. I’m not sure what’s wrong with me that it hasn’t happened yet.
Andrew has been working on a project upstairs since before the baby was born. He works from home 3-4 days a week and hates just sitting at his desk all day. So he’s been building a walking workstation with a treadmill. It’s looking pretty good actually. When the office is closer to organized I will take some pictures. Things are looking a little rough up there right now.
We are so excited that coming up here in the beginning of August we are going to have new neighbors living right across the street. And they are friends of ours! Hoping that having someone else working on their house so much motivates me to do the same.
Our friend Jill got Coraline a great onesie on a recent trip and I was sick of waiting to put it on her. It’s a little big, but here it is. I’m pretty sure before she goes into her bronchoscopy she’ll be singing “I Wanna Be Sedated”.
The dog always makes her smile, especially when there is close contact AND kisses.
Still smiling after the dog left. He leaves a lasting impression.
This says to me, “Hey-ay Daddy-o!”
“Oh there’s a toy in my hand? That is totally going in my mouth now.”
Till next week…
We will put an update on FB about the bronchoscopy on Monday.
So, it was a big week for appts. I’ll go in order.
Developmental Peds: Coraline is 4.5 months adjusted. Or at least she was when she went to the doc. And she is right on target with her adjusted age, and a little bit ahead for some things, developmentally. The doctor did a few little games to test her. She had to grab a red ring, and she switched it to another hand. That is a big thing, I guess…? She turned when Andrew called her name. I had never noticed that she did that, and then she did it today and I was like, “Oh, huh. I guess you DO do that.”
Loves her ExerSaucer and plays with most of the attached toys.
She’s still small for her age, but is growing on A curve. We’ll call it “Coraline curve”.
He also addressed our feeding concerns which got WAY worse this week. It seemed as though her Zantac just stopped working all together. She was arching her back, shrieking in pain, and waking up in the middle of the night having a meltdown that only calmed when she was more vertical. Bleh. It’s been unpleasant. And then she stopped eating. So he wrote us some scrips and sent us on our way.
Then we got a call from the GI doctor where we were on the wait-list…and they got us in almost a month early (THANK YOU!)
GI doctor: For those who don’t know…this guy works with the digestive system. We had a referral to a doctor with Community North with the recommendation from multiple people. If you’re looking for a pediatric GI doc, let me know. I will send you to the best. We LOVED him.
He agreed with the Prevacid as the next step for her. He also recommended rice cereal with every meal, and to stay on the Zantac till the Prevacid kicks into full gear. So instructions changed a little bit from Dev. Peds, but I trust this guy. The Prevacid is supposed to really kick in somewhere between 10-12 days. We are at day 6. (sigh) Times are tough around here with this nonsense.
The dev. peds guy had also put us on this stuff called Aryped. It was used as an antibiotic back in the day, but they found out it actually helped to push food through the system by contracting the stomach muscles. So we were on that for a bit and it turns out that in addition to moving through food one way, it also moves it through the other…meaning the child was a vomiting mess. Like…bad. So we stopped that. The GI left it up to us whether we thought it was helping. It really wasn’t.
Pulmonology: AMAZING! The pulmonologist was very happy with how she looks and sounds. He was a little concerned about her slow weight gain still, but said he is less concerned about it being an issue with her working hard to breathe and more of digestion issues (duh). He then turned her O2 off and we had a nice little meeting about what the next steps could be. He said that after a little while the nurse would come in and check her O2 saturation after not being on for a bit, and if she’s in the upper 90s or higher then he’ll recommend a sleep study. And then if that goes well we will go home on NO OXYGEN!!!! None. Like…the machine will not be attached to us. She will still be on her monitor when she sleeps for awhile after we’re done with O2, but I feel better about her wearing that anyway.
So the nurse came back and checked her O2 and she was still at 100! Go Coraline with your not-so-jankety lungs!
Weight Check: I keep thinking that something must have been pushing more weight on the scale. She couldn’t possibly be 11 lbs 12 oz. I suppose we’ll find out next week. But if that’s for real…then that’s awesome! We also found out that Coraline will be getting her first Synagis shot in the beginning of November. It’s weird to start thinking about winter again already. I really am not ready.
And seriously, how do we have an eight month old?
And how is she so cute?
Smiling at Dad as he walked by. Smiles are given much more freely these days.
Today is Andrew’s birthday! We are celebrating by going out with his parents, brother, and sister-in-law, and no kids. It’s gonna be crazy! We have a lovely babysitter, Julia, who is hanging out with the little one while we enjoy some Napolese at the new downtown location. Yums.
I thought, in honor of his birthday, I would post a little father/daughter flashback pic. Super precious moments…
So happy birthday, Andrew. I hope you enjoy the evening out. And I hope you enjoy the Nutella pizza. Cause we’re getting it. There’s really no discussion about that.
As for lil Coraline…
We hit 5 ounces gained this week! Woot! So she’s up to 11 lbs 6 oz. That doesn’t mean it’s been the easiest week. Her reflux has been HORRIBLE. We asked if her Zantac needed to be readjusted for weight, and they gave us .1 mL more each time, which is just silliness cause you can hardly measure .1 mL. Sooooo….we’re really hoping this GI consult comes through very soon. This poor child has been arching her back and screeching in her sleep. It’s not pleasant. But the good news is that she is eating more volume despite her discomfort. Seems like the new formula seems to be easier for her to take. We hope this keeps up.
She reads now. So that’s cool. We knew she was advanced.
Peter Rabbit is her favorite book so far. She seems to enjoy the pictures and the ability to lick, suck, and chew on the book without much damage.
She’s really been enjoying pulling her cannula from her nose. It’s driving us a bit crazy. I totally get it. But stop it.
We’ve got three doctor appointments this week: developmental peds, pulmonologist, and weigh in at peds office. Crossing our fingers for good news at all of them, particularly pulmonologist. Really hoping to get turned down to 1/4 liter this time around.
The update next week will be chock full of fun medical info.
We hit 11 pounds! Finally! She’s actually 11 lbs 1 oz.
If you ever want to feel like your baby is doing REALLY well and is REALLY big despite everyone telling you otherwise, go visit the nurses at the NICU. You’ll leave thinking your baby is a giant. We visited for the second time this past week and she got to see two more of her primaries and her OT and one of her favorite RTs and then some nurses who had her a couple times. And she got great big gasps from everyone.
New things this week:
She has been rolling over a ton. Sometimes when I have her on her belly and give her a little support she really tries to crawl. She still doesn’t have the strength yet, but she really wants it.
She doesn’t seem to like to talk or laugh when there are strangers around. Her zombie laughter is just for the regulars….and the pets.
She is still obsessed with the pets. She wants to be friends really bad.
The pets are a little friendlier toward her. The dog even came and gave her a little nose nudge yesterday. She LOVED it.
She got to visit a NICU buddy yesterday. Just down the hall from us was another little family with a cute little boy named Drew. All the nurses had already been arranging the future marriage. So we thought we should finally get these crazy sterile kids together. They were precious little oxygen-wearing twins, except Drew is way bigger. I’m gonna pretend it’s because he’s got 3 weeks on her and she’ll gain a pound and a half in that time. I like to pretend.
I have finally figured out a way to give her medicine and vitamins…and it makes me feel so guilty, but it totally works. I do a sneak attack when she’s laughing and has her mouth is wide open. It shocks her and I pretend I have no idea what might have happened to her. She looks at me like, “What was that?” and I’m all, “What’s wrong? Did something happen? I was just sitting here playing with your favorite lion toy. I certainly didn’t squirt those god-awful multivitamins into your throat. Nope.”
Her cannula has been bugging her more lately and she tries to tear it off…with a bit of strength behind it. I’m worried about having it on much longer as she is getting more deliberate about her movements. If she’s wearing this when she starts crawling I’m gonna be very worried.
And now for picture time:
A peaceful Sunday morning chillin’ in da crib with her friends.
A chill baby
Snuggling with her Pops
Playing in the ExerSaucer. Obviously very excited about it.
And if anyone had any question about who this kid belongs to… This is my 6 mos baby picture from 1980.
This past week has been a much better one. Coraline actually gained 4 ounces instead of the 1-2 she had been gaining for the month or two prior to that. She is now 10 lb 14 oz. I’m guessing if things continue she’ll finally be at least 11 pounds this next visit. She has been eating much better (other than a slight hiccup yesterday) and has been less fussy in the evenings which is SO nice.
New stuff this week:
We went to see a nutritionist/dietician who saw Coraline weekly when she was in the NICU. We discussed our concerns with her fortifying formula and she switched us to one that is more broken down and lactose free to see if that helps. We started it two days ago.
While we were at the hospital we got to visit with some of her nurses in the NICU and her speech therapist! We had a lovely visit even though she didn’t give hardly ANY smiles. Sadly, just minutes prior she was chuckling all over the place in the dietician’s office.
She has started rolling over quite a bit. If you put her on her belly for tummy time, it doesn’t last long cause she can roll herself right over. If she’s on her back…she almost always ends up on her side to look at whatever is next to you.
A neighbor brought over an ExerSaucer that her daughters used. Coraline loves it. She’s a little short for some of the fun stuff, but she enjoys being so upright.
She loves laughing at both of the animals. Both animals are still wary of her, especially the cat.
She has her fingers in her mouth ALL the time. I’m worried she’s gonna start gagging herself. She gets pretty far back there.
I got to get into her 3-6 month clothes bin to start pulling stuff out. Her 0-3 months clothes are getting a LITTLE short. We’re kind of at an in-between stage right now.
And now for photo shoot:
Coraline “Drooly Pants” Nelson
That’s my name! Don’t wear it out!
King checking out Coraline. Never sure what to do with her.
Classy lady. Rolled herself over and pulled up her dress. Nice.