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.