A year ago today we packed up our little 8 1/2 pound wonder baby, after spending 127 days in the NICU, and brought her home.
Coraline’s first day home. Snooooozin’.
The days before we left the NICU were stressful and frustrating. We didn’t know until the day we left if they would actually let us leave without a feeding tube, based on her weight gain. I stayed at the hospital essentially 24 hours for 3 days to try and get her to eat without her feeding tube on a schedule for an average newborn, which she was not interested in. If only she hated waking up in the middle of the night now…
But we hit our numbers so she could come home! It was just as cold last year at this time and I remember packing her up in this snowsuitish kind of outfit to get her home, which was RIDICULOUS! She looked like Randy from A Christmas Story…except more pathetic and sleepy. We promptly took a picture and took it off.
We took a lesson on CPR/Choking and then how to use her apnea monitor and her oxygen tank. So much to learn. We packed her in my car and got her home. I sometimes forget how hooked up this kid used to be. How hard it was to deal with her clothes and her oxygen line, especially when her motor skills improved. I forget how loud the apnea monitor could be…and how it actually became a sound we got used to because of how those stupid leads would get unsticky.
I’m not going to lie. There are times when I just want to take her back to the NICU and say, “You guys know what to do with her, right?” because sometimes this kid is not easy. But she has progressed amazingly. All of her doctors act amazed that a baby born that early and that small has been able to develop to the crazy little person she is. I don’t know if they’re putting on a show for our sakes, but really, I think it’s kind of amazing too. So maybe not.
- She loves to “read”. She has favorite books that she drags over to me and makes me read ( the same book 8-10 times a day is not rare).
“Read this to me! AGAIN! And AGAIN!”
- She is walking (kind of). She gets a little lazy about it sometimes because she’s still a faster crawler so if she has a mission she will prefer to crawl. We are practicing though.
- She is learning to wave at appropriate times. Every time we walk past the door to the office upstairs (where Andrew is usually working) she waves wildly. It’s pretty cute.
- She loves music. Her dancing has progressed from the head shaking to the one leg kick. Her favorites are Shovels and Rope, the Jeopardy opening song, the Daily Show opening credits, and “I’m Elmo and I Know It”.
- I am scared for her love of technology. She is constantly stealing or attacking anything with buttons (phones, remotes, receiver, monitor, computer, etc.)
- She wants to put EVERYTHING in the world in her mouth. I wish she would stop that.
- She has gotten a tiny bit better about eating baby food. She still can’t really eat table food. We have an OT that now comes out to see us once a week to help her learn how to eat. She doesn’t quite know how to use her tongue correctly, it seems. At least she’ll take a bottle like a champ now! Food has been our biggest issue with this kid, but we’re making progress.
She’s very neat.
- We have been spending some time outside when it’s been nice (which has been rare). She now tries to climb in her stroller whenever possible. I think she’s as stir crazy with cabin fever as I am.
- She has amazing upper body strength. I swear she can do pull ups.
- She has wild hair. It is wilder every day. I feel like we should take her to get it cut, but it’s just too sad. She has shaggy dog bangs way too often. (sigh)
A happy baby who climbed into her stroller, begging for a walk. Sorry kid. It’s snowing.
- Lately she has been HILARIOUS at night/bedtime. She used to be a nightmare. Now she just gets slap happy. I like slap happy better.
She does more stuff, that’s just the short list.
I would love to go visit some of her nurses at the NICU soon. They are the ones that got us through her stay with peace of mind. They answered phones at all hours to answer questions. They changed their schedules so we could be there for a feeding or even simple diaper change. I know it’s their job, but there is no way to thank them enough for being so good at it.
It seems like RSV season is ending early this year. (YAY!) The numbers with the CDC are looking really low compared to last year. We are almost free to move about the country. On our list of trips this year:
- Chicago! This weekend! Really it’s just overnight and we’ll only be there for a concert and will be leaving the next morning/afternoon. BUT it’s the first time we’ve been out of town since Oct 2012. Boom!
- French Lick! Spring condo time in April. We are heading down there to hang with the in laws (including Coraline’s 2 year old cousin, Anna). We are excited to have the kids together. Let’s hope the weather cooperates.
- Nashville, TN! In June we will be heading down to spend a long weekend at a really fancy looking house rental just south of Nashville, pretty close to the Natchez Trace. Super pumped about this. Also going with the in laws and lil cousin, Anna.
- Countless number of cemeteries! This kid has no idea what she’s in for.
That is all for now. Thanks to family and friends who have come to visit us at home during our LONG winter indoors. It has been appreciated.
A year ago, today, I was feeling kind of crappy. I had been feeling crappy for awhile. I had this weird shooting pain through my back that was so bad it shot down my arm. I was swollen. Teaching freshmen after your doctor tells you to keep it cool and keep your feet up a lot is not the easiest thing in the world. I was so tired. I just felt crummy. I looked up my symptoms and it pointed to a gall bladder issue. So I called up my baby doc and she said to call up my regular doc and I did. I went in. She took my BP (no major spikes…just a little higher than normal) and set me up for an appt for an ultrasound on my gall bladder. I would not make it to that appointment.
On November 20, 2012, I went to see Lincoln with my sister and my dad for his birthday. Before that we had a fabulous breakfast at Patachou. About halfway through the movie the pain got worse. By the end of the movie I couldn’t stop twisting and turning in my seat. The drive home was even worse. I didn’t think the pain COULD get worse than it was and it continued to do so. I tried taking a bath. I couldn’t eat anything for the rest of the day. I felt so horrible. No position felt ok. I had never felt like that in my life. Finally Andrew called the doctor after hours and he told me to come in. That drive to the hospital felt SO long. I remember thinking, “OMG, when I’m in labor this is going to be the worst drive ever! Why did we pick a hospital so far?!” Well, I wouldn’t ever go into labor.
We got to the hospital and got me checked in and got me morphine (which was so amazing). Then the doctor came in to tell me that just before 26 weeks gestation (not even into the 3rd trimester) I had to have the baby that night. Oh, and actually in about 30 minutes. Any questions? WHAT?! He said I had severe pre-eclampsia and HELLP Syndrome and the pain I felt was my liver and my platelets had dropped so low I would need a transfusion. He said that I would have a stroke or start seizing very soon if they didn’t deliver her. But the baby was doing ok…so far. Her heart rate was fine. I knew that babies this young COULD survive, but…eeeek. I was so out of it I couldn’t really dwell on what was happening. In a very short time they had me prepped for surgery and waiting for my blood. When I was rolled into the operating room I heard Bruce Springteen’s Dancing in the Dark, and I imagined Courtney Cox dancing on stage with Bruce, and was amused, (I was very glad that my surgeons liked Bruce – for some reason) and then I went to sleep.
I woke up and remember very little about the next few days. They had me on magnesium. I guess my blood pressure wasn’t stable for awhile. For those of you who have not had the pleasure of being on magnesium, let me explain to you how it feels. In your head, you are slow. In your body, you are on fire. I was in a room with the temp turned almost as low as it would go and was burning up. Poor Andrew was shivering in the corner with a blanket and I was like…trying to tear off any cloth near me. I should pause now and point out that I can’t imagine Andrew’s view of all of this. I still can’t. I am grateful to have been completely out of it during this whole process. He had to deal with the initial chaos clear-headed. Ugh. So, continuing on…I won’t get into the gross details of the next couple of days, but it was gross. But it is all a blur between the painkillers and the magnesium. I don’t actually remember how long I was there. I barely remember seeing Coraline for the first time.
But I kind of remember…
They rolled me up in a wheelchair. Standing to wash my hands for two minutes hurt. But I did it. And then I got into the farthest room in the NICU. It was huge, with this one little isolette with a light and it was covered with a blanket. And I went over to the side of it and looked at her and see looked SO broken. It was both amazing and heartbreaking at the same time. She was completely translucent. She was red and you could see through her skin completely. She was bald. Her little fingers looked like ET’s. I was afraid to touch her. She was not supposed to live like this. However, as soon as I started meeting the nurses in the NICU I felt immediately better. They were so on top of it. They answered every little question I had and told me to ask more. They were never annoyed (or they hid it very well) and took such good care of her.
Coraline, Day 1, born at just under 26 weeks at 1 lb, 1oz., 11.3 inches.
She was 1 lb 1 oz when she was born, and dropped a tad bit before she started to gain. It’s hard to imagine how small that is. She was about the length of a Barbie doll and looked a lot like a miniature 80 year old body builder after a competition. You could see every little muscle through her thin skin.
But she grew, and grew, and we were lucky with very little complications in the hospital. She never got sick. She just grew and got healthier. She is now a crazy 14 1/2 pound mobile insane-o pants. She crawls EVERYWHERE and pulls herself up to do things like: play with the DVD player, knock glasses off coffee tables, rip up ANY paper she can find. She is a baby on a mission.
Coraline, just under 1 month old, sporting her support for Santa.
Coraline about 2 months old.
Coraline about 3 months
Coraline about 4 months
Coraline about 5 months
Coraline at 6 months
Coraline around 7 months
Coraline around 8 months
Coraline around 9 months
Coraline this month:
- Chatters (babababa, daddadada) especially when trying to go to sleep whilst chewing her thumb at the same time
- Gives herself hickies on her arm! What?
- Dances – She’s not quite got the rhythm that I hope she’ll have one day…
- Is no longer on any oxygen and will be off of her monitor any day now.
- Has amazing, tall, curly hair.
- Being read to
- Chewing (particularly on her board books, the rail of her crib, and her comb)
- The dog and cat…still. Both of them are less than enthused with her antics.
- Throwing her toys out of her bed
- Being toted around in the Ergo when she’s tired
- Taking walks, but not long walks.
- Her babysitters. We are lucky to have a couple of people on hand (her grandparents and our new neighbor Julia) who have been able to help out. And Coraline loves them. She has so far not gotten into the separation anxiety stage, because she has too much fun with them.
- Baths – and splashing about, and trying to reach for the faucet
Coraline doesn’t love:
- Fruits. Oddly her favorite solids so far (even though she’s generally not a huge fan of solids) are peas, beans, and sweet potatoes. She hates the sweet stuff. Whose kid is this?
- Being contained.
- Diaper changes (ugh)
- When the dog goes crazy (usually at the mailman)
We are both exhausted and delighted by our little against-the-odds baby. She is truly amazing. Every time a diaper change devolves into a WWE wrestling match I feel like I need to remind myself what it was like to change her diaper a year ago, something that seemed like it required tweezers.
Well, we are on RSV lockdown for the rest of the winter. I am attempting to plan a late spring early summer trip to somewhere warm. I love planning trips.
I am currently supposed to go back to work in March at IPS but unless I get a nanny it doesn’t seem like that can really happen. A nanny is not financially responsible for someone who is teaching K-12. That’s really just kind of silly. So I’m really enjoying my position at School on Wheels. I’ll stay there for now. I’ve had enough to keep paying my student loans and my car payment. We’re good. I do miss teaching though. Every once in awhile I see something online that would be really cool to use in the classroom and I get a little sad. But then I read Facebook posts about being behind on lesson planning and grading and SLOs and TLOs and entering grades and I’m just like, “BIG sigh”.
Coraline has her one year appt on Friday with the doc and then an appt in January with her GI doc. Past that we are looking pretty good. We are supposed to call in January to make a spring appointment with developmental peds. I think pulmonology and opthamology also want to see her later next year but we have no appointments currently. Our immediate goal is to stay healthy, all of us. I’ve never used so much soap and sanitizer in my life. I’m that person that grabs a Lysol wipe at the grocery store and slathers the cart, and then sanitize my hands again AFTER sanitizing the cart. It’s obscene. I hate what I’ve become. Erg…and I just remembered…I need to get my flu shot. I suppose I will do that on Friday. Boo.
Try to enjoy the holidays! Coraline won’t be able to come with my to my family’s events because there are too many people and too many kids. But we’ll hopefully be able to enjoy some time over at Andrew’s family’s place, so long as everyone stays healthy. And then next year…we’re gonna celebrate like real people.
One more thing…I can’t thank enough the people who have made this year move smoothly: family, friends, nurses, doctors, co-workers, etc. You all know who you are. We both appreciate it so much.
So I don’t really think it’s been THAT long since I’ve written a blog post, but I feel like we have a totally new baby to tell you about. First let’s cover medical updates.
Cardiology – I am pretty sure I mentioned before…NO MORE CARDIOLOGY…until she’s like 80. PDA is gone.
Opthamology – We went in last week. ROP is not an issue anymore and now we’re just waiting for her eyes to turn bad because she’s my child and will probably be near sighted. Sorry, kid. For now she’s in OK shape though. We have to go back in a year. No biggie.
Developmental Peds – We just had an appt this last week. She is doing GREAT developmentally. She is where she should be for her adjusted age. She’s a little small size wise but she is on the curve! And she is still moving up! She is about 13 lbs 13 oz. (that’s an average of the two weights we got). That’s a pound higher than when we had her weighed last. We were VERY excited.
The dev. peds nurse practitioner was looking over her chart and said, “Wow…490 grams. You just don’t see babies that small doing so well. It’s very rare. I really don’t see that very often.” 490 grams is very small. TWICE that size is very small. It’s easy to forget how fragile she was when she’s throwing herself all over her pack and play and trying to claw over the couch to attack an animal. We are so happy with her progress…obviously.
Pulmonology – The biggest news…We are off O2 during the day! She just sleeps with it. And she has been doing great without it. It’s actually a huge pain to get it on her at night because she really doesn’t want it on anymore. We are supposed to be getting a sleep study sometime very soon. If we haven’t heard from them Friday we are supposed to call. So we’ll see! I’m on Fall Break this week and next for work and it would be a good time to get it out of the way. The pulmonologist was very helpful in explaining the results of the sleep study and bronchoscopy, which I feel like no one had done yet. He wasn’t overly concerned about the results of either. If the sleep study goes well then we will be off O2 for good. She will continue to wear her apnea/heart rate monitor at night when she sleeps for 6 more weeks. That’s totally fine. Let’s do it!
Pediatrician – She will start getting her Synegis shots in November. This is a shot to help lessen the effect of RSV if a preemie were to be so unlucky to get it. It doesn’t prevent it! It just prevents it from getting really bad. Our next appt will be her one year, which is next month. That is insane to me.
As for fun new stuff…
This baby is a wild and crazy kid. It seemed like overnight she had developed all new skills, including:
Almost crawling. I actually saw her crawl twice, but she couldn’t recreate it. She wants to crawl on her hands and feet as opposed to her hands and knees. It looks super awkward.
She is a stander! In fact we had to take the bassinet out of her pack and play cause she would pull herself up and then almost fall out. I’m starting to get nervous with her in her crib cause she looks like she is plotting a way to climb out. I wouldn’t doubt her ability to be able to do that very soon. She is crazy strong.
“Yeah…Dad….you’re gonna need to carry this one for me. This thing is WAY heavier than me.”
She is chatting up a storm! Babababa, Mamamama, Wawawawa… It’s all very exciting. This all just started this weekend.
She has lost her desire to eat solid foods, mostly because she enjoys spitting them so much more! She loves to spit and give raspberries. It’s best when there is food in her mouth. (sigh)
She loves her toys and reading/eating her books. Paper products are most appreciated when they are dissolving in her mouth. So gross.
“Would you like to hear some Chopin or Rachmaninoff?”
We’ve started taking walks with her umbrella stroller and she loves it. She laughs and kicks and goes nuts for awhile before she settles in to just looking at everything.
She still wants to be with the dog. The dog still wants nothing to do with her. Her and the cat are buds.
“Oh! Soup! Never leave me, ever ever ever ever ever…”
She only has hair on top. It’s all fuzz everywhere else. And the hair that is on top is usually crazy curly. It is definitely NOT her mom’s hair.
She is eating WAY better. Like…I don’t have angry tears stinging at my eyes every time she needs to eat anymore. A non-eating child is beyond infuriating.
This week we went to our first cemetery!
We went to the pumpkin patch/apple orchard with NICU buds. She did great…and we got cider slushies, which were awesome.
She got to meet a bunch of new family members at family dinner night. She hadn’t met a few of them yet.
We’ve been to the farmers market. Her stroller cart works great to carry home food.
And now for some visuals from our trip to the pumpkin patch…
Coraline looking VERY concerned about what her buddy Drew is talking about.
Our lil punkin. She’s kind of a doll.
In the patch, finding a perfect pumpkin.
She loves to ride on shoulders. Sometimes Andrew takes her around like she’s a parrot.
Coraline’s buddy, Drew.
And to finish up this post…just a reminder. RSV season is upon us. If you want to come visit, make sure to avoid us if you have been sick or if anyone at home has been sick. Or if you’ve been around sick people. We really want to avoid having a sick baby this winter. And we really don’t want her back in the hospital. Please don’t be offended if we ask you to sanitize. It’s just how we roll over here these days.
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”
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!
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.
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.
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.
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.
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.
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
So…this past week SUCKED.
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.
“Oh, I’m so delighted with my hands! Tee hee!”
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.
In the meantime…Happy Birthday, Andrew!