Well, we are home! It only took four months and one week. We could have done it in 4 months, but this little lady would have come home on a feeding tube, and I’m telling you…from just the one night we’ve had her home, one more tube coming off of her could have done me in.
I spent Sunday night through Wednesday morning at the hospital, full time. My goal was to get her to eat the minimum required on her own, without an NG tube. And she did it! She gained weight and is doing well. Turns out this baby doesn’t like to wake up a lot so she cluster feeds, or eats a TON in less meals. This works for me, especially at night, but waking her can take up to an hour of wiping her face with a cold cloth and leg massaging. She loves her some sleep. I totally get it. But I’m not a fan of this 3-5am time slot where waking and feeding takes FOREVER.
We had her first appointment with the pediatrician today. She is a lovely lady and said that Coraline is doing swimmingly for her adjusted age. she is between 25-75% on height, weight, and head size. She is below 5% on her actual age. Awww…. That’s ok. She’ll catch up. The office was very good about providing us a special entrance away from other patients to protect her from the danger. This brings me to our update on Lockdown 2013.
We really would love to have visitors. Please, if you’re thinking, “Oh…they want to be alone with the baby…” You’d probably be wrong. We have had this baby for 4 months now. We are going to be trapped in this house with her for awhile (more on that later). So please, come visit! We are in the tail end of RSV season though, so there are a few rules and precautions that we have had to add to the visitations.
- Please do not be offended when we come at you with hand sanitizer as you walk in the front door. You may be doused in it.
- If you have been sick, or if anyone else in your house has been sick for the past week, skip the visit.
- If you have a tickle in your throat, be overly cautious and don’t visit. But you should start taking Zicam right now.
- If you are a smoker and you would like to visit, please don’t be offended if you’re asked to change into a short we have here. Even residue from cigarette smoke can be very dangerous to these micropreemies.
- If you have kids, please leave them at home for the time being. They may seem totally healthy but could be carrying any number of viruses or germy germs. I don’t dislike your kid, I am just trying to keep mine as healthy as possible.
So, you may be saying, “That’s lame. Kids need to get sick to build up their immunity.” And I don’t disagree with that, unless the kid has a compromised system, especially her sad lungs. Coraline was born with a severe disadvantage. She was born at almost 26 weeks gestation, which was not enough time to get her lungs ready for the outside world. What they will usually do in those situations is give the mom 2 steroid shots over the course of 6 hours. That helps with lung development and sometimes, if you’re lucky, you’ll get a kid that doesn’t have to live on the vent for two months like ours did. I didn’t have 6 hours when I came to the hospital. Once they found out what was wrong with me, they said I would be in surgery in a half hour or I would be at risk for a stroke. So between her early arrival, and the damage that the vent did to her little alveoli, she can’t afford to get sick until her lungs are done developing. Her pulmonologist said that once she’s about three she will have developed what lungs she will have. When she gets sick it will just push her farther back. We’re not cool with that.
Please do not be upset that we will not be able to bring her out to functions either. In addition to her being a fragile little peanut, it is the biggest pain in the ass to get her from one place to another with all the stuff she’s attached to…one more reason I am so grateful she is off the NG tube. Her oxygen tank and monitor go with her everywhere. Andrew and I will do our best to come do things, probably not together for awhile, but Coraline will be staying at home.
What I would LOVE to do is to have a big party so everyone can come see the new addition and all the fabulous work Andrew did on that house before the baby came home. Sadly there will be none of that in the foreseeable future. Boo.
We’ve come too far to start falling back.
A few pictures to see how far we’ve come…
Coraline on Day 1
Coraline on Day 128
She’s pretty darn cute.
Over the course of our stay, which has now been 110 days or so, I have heard some funny names for babies that have been here for a long time. A “senior citizen” is the first one I heard when we came here that made me chuckle. A vision of tiny babies with canes and walkers roaming the corridors popped into my head. And then the other day a nurse said to Coraline, “You don’t want to be a crib potato, do you?” She was referring to her laziness, and not wanting to wake up when it is required of her…which is every three hours. She has gotten better! I will say that since we have started the eating by mouth thing, she has picked it up very quickly. I have heard words being bandied about like: amazing, shocking, great, surprising! One of her primaries just told us that for babies that were on the vent as long as she was…it’s very rare to pick up on feeding so easily. So, go Coraline!
But yes, this little crib potato got a big time crib this week. She got a new mobile. She can sit with her boppy IN the crib, which is really nice. I’m pretty sure she’s diggin’ it.
She still is a sleeper, and when is snuggled, can’t help but to doze off. Turns out her dad is the same way. I took this over the sound of snoring.
She has also been enjoying her vibrating bouncy chair, a gift from her Aunt Kristen. Whenever she gets fussy, I just set her in there and she’s all, “ahhhhhhhh…..”. It’s nice.
There has been talk of discharge from the nurses. We don’t have an exact date, but it will probably be within the next two weeks. She will almost definitely be going home on oxygen, we just have to do a test to find out how much. She might be going home on an NG tube (a feeding tube that goes from her nose down into her stomach). We are hoping to avoid that. I will post the release date as soon as we know it.
- Bathroom pics will be posted this weekend. It will be completely done by then. I SWEAR.
- We are trying to figure out what to do with the garage. It is supposed to show progress by 3/22. Andrew and I have differing opinions on the topic…soooo….yeah.
- The baby’s room needs a few things here and there and we need to put up all the wall art I have planned. when that is done….pictures will be posted. Almost there but not quite.
- The Dining Room is slowly but surely losing tools that are heading back down to the basement. Yay! The house is starting to look housey again.
- I am heading to Kittles Outlet here in about 5 minutes to see if I can find a few things (nightstands and a recliner) to complete the work.
So we had our first 100 days in the NICU! Crazy. Her primary nurses put on quite the little event for her special birthday and even decorated her room. She got lots of great little gifts: clothes (including some new IU wear), puzzles, a keepsake box, a lovely little wall decoration, baby silver spoon and fork, a puzzle, rattle, and new book. Then the parents got to have cake with the nurses and some family who were able to stop by.
Note the hilarious cupcake pinata in the picture that someone suggested we use for her first birthday (filled with mini bottles of hand sanitizer).
The new trick we have to learn is how to eat. This is the next big obstacle to coming home. Who knew that eating would be such a challenge. Turns out she is a smart baby. And a smart baby is a lazy baby. If she pretends that she’s SOOOOO sleepy and can’t bear to wake up during her feeding times she knows they’ll just put it in her stomach via tube. It’s so much less work. So we’ll give up on trying to feed her when she burrows into me and refuses to move. We’ll put her back in her crib, and I kid you not…she smirks. She knows. This is a lazy trickster baby. But she’s still very cute.
Coraline is getting so big. She has grown out of all of her preemie clothes (save one outfit, which MUST have been labeled with the wrong size) and is almost growing out of her newborn clothes. Her newborn diapers are definitely getting a little snug. She is up to 7lbs 6oz. One of her primaries thought that it was a shame some of these super cute clothes go to waste if she was going to grow out of them soon, so we’re making sure to try on the cutest stuff and then have little fashion events.
Who knew that any kid of mine would be a fashionista?
As for her health…
Lungs: She is still on a one liter flow at 100%. She never desats anymore unless she takes her cannula out to get a little oxygen treatment in her eyeballs. I bet that feels nice. Sounds like she will go home on oxygen (most likely) but my guess is that it will probably be at a lower flow than 1 liter.
Eyes: Her ROP is stage 2 in both eyes, but is regressing in both eyes and her vessels are completely vascularized. Woot!
General well-being: She has still never gotten sick. We are very grateful for that.
Size: She is at close to the 50th percentile for where babies should be at her age, using her adjusted age (when she should have been born). We like it!
Cuteness: Off the charts. Especially when she’s awake and engaged. She’s kind of a doll.
What’s next? Well, she needs to eat. Currently we are working on au naturel but she will be starting on trying a bottle this weekend…adding it to the mix. We don’t want her going home on a feeding tube. When she does eat she seems to do pretty good. She doesn’t choke or have an issue coordinating breathing with eating. Lots of preemies have an issue sorting that all out. She also has a groove on the roof of her mouth that is almost like a cleft. This was caused by her vent tube being in there for so long as her palate was developing. This makes it harder sometimes for babies to get a good suck going, but she seems to have that down as well. Hopefully she’ll just be here a couple more weeks.
- The back parking pad has been cleared thanks to Andrew and 6 manly men to come help with trucks.
- The bathroom is almost done. We’re just finishing up with the painting. The wainscoting needs one more coat. The ceiling needs one more coat. Then we’ll start on the wall color. We should have it all done by this weekend and it will be so nice to put up a more solid shower curtain. Right now we’re using clips with suction cups. Very precarious. Pictures will be posted with the final product.
- The baby’s room had a great overhaul last night. Her dresser has been moved in! Changing table in its place. Decorations starting to make their way to where it belongs. The big thing that needs to be finished for this room is completing the painting for her storage area doors.