by Erin | Aug 25, 2013 | Blog
This is going to be the last of the weekly updates, unless something happens in the course of Coraline’s progress. But…she’s doing so well that each Sunday you should really just assume she is kicking butt and getting bigger and better. I will actually keep posting, but it will be every 2-3 weeks rather than weekly.
So, for this week, we have great news from the doctors!
Pediatrician: She weighs 12lb 9-11oz (we got two different weights on the same day. Soooo…yeah). She is about 25 in long. Her head is 16 in. (I think). She is where she needs to be developmentally for her adjusted age. She is almost on the growth curve for her actual birth date…not quite, but she’s gaining on it. I was convinced that she was anemic because we haven’t been able to get her to keep her vitamins down anymore. She completely throws up the poly vi-sol every single time she takes it. So now she is on Vitamin D drops and iron drops. It’s not the iron that makes the poly-vi-sol so gross, it turns out. It doesn’t help, but they (I don’t know who “they” are) say the B vitamins are the real culprit. So…anyway, she got a blood test and she is NOT anemic. At all. So happy about that. She got a little finger prick, didn’t cry at all, and tried to suck the bandaid off her finger. So gross.
GI Doc: This was just a follow up appt. to make sure that her reflux was getting better and she was still gaining weight. The doctor seemed happy with her progress and we are very happy that the Prevacid has helped so much. He wrote a new scrip for Solutabs instead of the suspended meds in liquid. So we’ll see how that goes. You know what’s stupid? How expensive medicine is. Ugh.
Cardiologist: When we got there they told us she would be getting an Echo. She hasn’t had one of those since she was VERY young in the NICU. So I was a little worried about her being difficult. An echo-cardiogram kind of looks like an ultrasound. They have a little wand they put gel on and rub it over the chest and you can watch the heart pumping. There are all these colors and it’s kind trippy, man. Coraline did great while they used to echo to find her PDA.
Coraline assisting in her own echo-cardiogram. I’m sure the tech appreciated it.
Most preemies grow out of their PDA without surgical intervention, eventually. We are lucky that the indocin helped to close it a little when she was in the NICU so she didn’t need ligation surgery. So then they tried to take her blood pressure and almost amputated her poor leg with that cuff. They finally gave up and then we waited for the doctor, and waited, and waited…over a half hour. I’m really glad she ate right before we left home that day. But the doctor came in and listened to her heart and said, “Well, the PDA is closed!” Yay! I was so nervous about being late to one of the first meetings of my new job that I was not as excited as I should have been. One less specialist….not that I didn’t like our cardiologist. What is a PDA? I thought you might ask. Wikipedia will help you.
We have stopped our weekly weight checks. So we don’t have another doc appt until September 27. And that’s the biggie – pulmonology. Wah Wah.
Other new Coraline tricks and activities:
She is still Lil Miss Pukey Pants. We just cross our fingers that she won’t have a meltdown cry fest, won’t laugh too hard, or get the hiccups right after she’s eaten because her gag reflux is ridic. And she throws up. A lot.
BUT…she’s doing way better on eating, so I’m less concerned about her dying from dehydration when she does that.
She took a 175 mL bottle yesterday. That’s been her record so far for biggest bottle. That is almost 6 oz, for all you kids wondering. She’s day 5 days in a row of 20+ oz of food.
She is starting to get into the phase where she is more whiny being held by people who aren’t mom, dad, or people who are here pretty regularly. She’s just a little Nervous Nelly.
Quite the little snuggler with Mom or Dad.
She wants her cannula in her mouth. Then when she gets it there she’s like, “ACK! This thing is in my mouth!” with these scared wide eyes. She’s so weird.
We went to the Feast of Lanterns yesterday with the fam to just hang out for Coraline’s Uncle Stephen’s bday. She got to see her cousin, Anna. She cried every time anyone else wanted to hold her…and threw up. She’s a real party pooper. Granted, she really needed to take a nap.
Her arms are getting stronger. She’s holding herself up on her stomach a little more and for longer. She is even starting to play with toys sometimes while lying on her stomach. Crawling is just around the corner! Better get the baby-proofing outlet plugs sorted out.
We had to give her swing back to the original owner because she was VERY close to hopping right out of it onto her head on more than one occasion. It was kind of sad, but I’m not going to miss those stupid songs it played. We’ve actually gotten rid of quite a few things from her early times and the LR is once again becoming not so much the baby room anymore. I would like to buy a little rug so that we can play a little easier on the floor. I’m just nervous about what the cat will do to it. He’s so bad.
The dog is continuing to become more tolerant of her. He still does not like her flailing, or being hit with her cannula which she likes to whip around, like she’s trying to double-dutch. He does like to lie on her blankets and plays with her clothes. Not sure if that’s a good or bad thing.
“I’m just keeping it warm”
House stuff:
We are at kind of a stand still. I bought a new kitchen mat and felt REALLY productive. So that might tell you something about how much we’re getting done. I would personally love to spend some time doing a few things that would spruce it up a bit in here. Maybe sometime before the next post. I would like to:
- Put up wall hangings (esp. in the LR where there is now a huge wall where the entertainment center stood a year ago).
- Paint and touch up trim that needs it (all over the house).
- Paint the door and window in the bathroom, which is really all that remains shabby in that room.
- Finish painting the doors for the baby’s storage spaces (Seriously…this should have been done YEARS ago).
Now…one of our friends has moved across the street into a house that is a fixer upper. We are so excited; and I feel like working on our house might not be as fun as helping her out. (sigh)
And now for something completely different…
One of Coraline’s best buddies, Nathan, bought this little outfit in Mexico when he found out she was going to be a girl. And guess what! It finally fits her!
I had a request to attempt to part her hair on the side after her bath this morning. It turned out not so great.
Yum, tasty toes!
by Erin | Aug 18, 2013 | Blog
I started my training for my new job this week. It has been perfect so far. I’m really excited to have such a great schedule with a really great organization. Hoping this works out for the whole family for awhile. While in training the craziest thing happened. We were introducing ourselves and through the course of us describing ourselves I found out that another girl who has the same job as me at a different site was our next door neighbor in the NICU for MONTHS. I never met her. I recall talking to her husband in the break room once. They also had a 1 lb 1 oz-er and I remember the nurses telling us that they couldn’t wait to tell this kid’s parents that they were no longer the tiniest peanut in the NICU anymore. We took that prize for a little while (yay….). So anyway, it’s kind of fun to have people to talk to who are going through the same exact stuff (lungs and eating and tiny babies and whatnot).
We’ve been really lucky to get to know (and even hang out with) some other people who were neighbors in the NICU and it really helps to a.) vent b.) compare notes and c.) have babies socialize without fear of illness.
As for Coraline…
She has calmed the rage down. Thankfully.
She’s gotten better about taking a bottle, but not taking the whole thing. She should be able to easily take a 4 oz. bottle or more but she has been regressing to only wanting 2-3 oz. a feeding. Lame!
She’s getting more hair beyond just the top of her head, which is nice.
Fuzzy headed babyface.
She is doing a lot of spitting/raspberries and laughing at the same time.
Laughing…
And….spitting.
She is winning over the animals a little more each day.
Best buds! Well, on their way to being best buds. The dog has trust issues.
“Hey King, mind if I use your head as a foot rest? Great. Thanks.”
She has been hit or miss each day on the solid foods. So far she seems to love pears and sweet potatoes the best. I mix them with some milk and oat cereal and she seems into it…some days.
She’s been waking up most nights at 2:30-3am just to cry for a bit. That’s fun.
Still see no teeth but she’s been chewing on everything. Blankets, fingers, clothes, whatever she can get her hands on. She doesn’t suck her thumb so much as chews her thumb.
“Chomp chomp chomp”
Yesterday she kind of tried to crawl. She just sort of rocked back and forth on her hands and knees. Not really sure what to do.
“I’m gonna figure it out…eventually.”
She’s getting better about sitting on her own. It’s fun to watch her use her core to keep her balance. She’s getting pretty good!
Sitting Up! Well…sitting forward. It’s fine.
Coming up:
Monday – 9 mos peds appt (no shots this time!) and a GI appt
Thursday – cardiologist appt
Weight update next week. Crossing my fingers for 13 lbs.
by Erin | Aug 11, 2013 | Blog
So this week has been an adventure in meltdowns.
Usually the mornings and days are lovely times. We get smiles and laughing…and usually pretty good naps (this is not always guaranteed). But then the evening comes. We’d had a really nice stretch where the evenings were more settled and we would relax and have a nice time together. Not so anymore. She’s back to the stage where it’s SO obvious she is exhausted, but won’t calm down. She is starving but won’t eat. She constantly tries to climb out of her Rock and Play, which along with her bouncy chair is the only place where she’ll eat. She does not normally allow you to hold her while she eats. So the whole climbing while eating makes things difficult (especially when there’s screaming and sobbing involved, as well). Many people have suggested that this is just a time of development. I wouldn’t be surprised. She is doing all sorts of new things and while it’s fun to watch these advances, it’s not fun to watch the fall out.
New things!
She has discovered her own hair, and plays with is a lot. It becomes a frizzy mess because of this and it’s kind of hilarious. See opening video.
When you’re not paying proper enough attention to her, she yells at you.
She loves her jumping swing, and torments the dog by creating a barrier between the kitchen and dining room. Like all animals he wants to be where he currently is not.
“Alright dog. If you want through, you gotta pay me $5…or at least let me smack you in the face with my jagged nails!”
Her and the cat are becoming best friends. The other night she used him as a pillow and then he groomed her hair. It was pretty adorbs.
Soup as pillow.
Soup as bather.
She has her fingers in her mouth a good chunk of the time these days. I haven’t seen any breaking through yet, but she may be teething. She’s starting to gnaw on her clothes as well.
Yesterday we got to visit with Coraline’s Great Grandpa Reed. He has calmed himself a baby or two in his time, and he was a pro with getting lil Miss Sassypants to chill out.
And we took a four generation picture of James Roy Reed, Gloria (Reed) Nelson, Andrew James Nelson, and Coraline Reed Nelson
This coming week is a big one for us. I start training for my new job. I might have jury duty. We have an appointment with her GI doctor to see how she’s doing on the reflux front. From what I can tell, it’s getting better. She still spits up and has a wicked gag reflex which doesn’t help with vomiting. So we’ll see what he says. I think the Prevacid has definitely helped.
That’s it! Now a couple more cute pics.
by Erin | Aug 4, 2013 | Blog
Health update
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.
With her dog friend
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