After a week and a half at home, we continue to keep both babies alive and have even managed to shower once or twice ourselves!
In honor of Prematurity Awareness Month, Children’s asked us to write a blog post for their Kid’s Health Blog. Bryn & Nora jumped at the chance to share their story on another part of the interweb:
The home health nurse came again today and Nora has hit 8 pounds!!
Thanksgiving has new meaning for us this year. We hope you all have just as much to celebrate. =)
So we’re a little behind with sharing this HUGE NEWS, but the girls are HOME!!
Their last week at Chateau Children’s was eventful:
Both had “fancy” hearing tests. They had both failed the Otoacoustic Emissions (OAE) test with the nurses several times because they are such snorty girls and their noises interfered too much with the test results. The audiologist came and gave them each the Auditory Brainstem Response (ABR) test, which took about an hour and a half each! Nora passed, but Bryn has to go in for a follow-up test in a couple months because she most likely has some fluid in her tiny ear canals skewing the test results (either that, or she’s gonna be in mommy’s class in a few years)!
The opthamologist came and examined the girls’ eyes one more time, and declared BOTH of them to have completely mature eyes and NO retinopathy! That’s right–between last week and this week, Bryn’s eye disease disappeared and her eyes fully matured. Prayers working–exhibit A.
Erinn the music therapist came and rocked out a little louder this time so Bryn could hear.
Grama Hansen came for some floor time. Grampa Hansen visited in his swat suit and long underwear between drywall projects, looking like a cross between an FBI agent, a contractor and a homeless man (it’s a crime we don’t have a picture of this)
The doctor told us early in the week that Bryn totally had the green light to go home over the weekend, but Nora was still being putsy with her feeds and wasn’t gaining weight, so she had to prove herself over the next few days. Girlfriend had us on pins and needles with every bottle, hoping she’d take enough before she passed out. She lost weight almost everyday last week right up until the weekend, toying with mom and dad’s sanity. On Saturday the doc said they were BOTH ready to go home! (Cute sign left by Karen, our favorite night nurse)
We didn’t dare waste time, in case she changed her mind. We got treats for the staff, got the stroller put together and Nick put on his discharge shirt.
We waited for an empty elevator (damn, that stroller is huge, even folded up)
We gave them one last feed
ripped their lead wires off, and turned off the monitors (goodBYE beeping)!
Goodbye, Children’s! We owe you our first born(s). I will especially miss Christopher greeting me in the mornings at the welcome desk and asking if I have a fever, cough or runny nose everyday. Your concern for our health has been so sweet. =)
You best believe I rode in the backseat! Bryn–wake up–you’re missing all the drug deals on Chicago Ave !
Hey Nora–where are your cute giraffe pants? What’s that? You peed in them (and your carseat) on the way home? Oh.
So now the fun really begins! As of press time (this blog post was written in 5 minute increments over 3 days), we have managed to keep 2 human beings alive for 72 hours, and even shower once. Thanks to our awesome Upper Room community (more specifically The One and Only Kathy Jones!) we even have FOOD!! http://mealbaby.com/viewregistry/14571175
Now–visitors! We want nothing more than to share Nora and Bryn with all of you! Because it is RSV season (common cold virus, but very dangerous for infants) and they are preemies, a home health nurse comes monthly between now and March to give them RSV shots. At $2800 each (x2…each month…for 5 months), you can imagine how important the doctors feel it is for them to NOT get sick! So Dr’s orders are: If you have not been sick in the last 48 hours, haven’t been around anyone who has been sick in the last 48 hours, and are not a kid, you can visit (but not touch)! We also need to limit the number of visitors each day and the amount of time visitors can stay. Soap and water hand-wash when you arrive (we tried to steal the handwashing machine from the ICC before we left–no dice), and, thanks to the take-down fairies, we ended up with some cans of hand foam in our bag on the way out (!), so you can foam in and out hospital-style. SO FUN, RIGHT?!
Words cannot express our gratitude to all of you who have been reading this blog, rooting for our miniatures, posting supportive comments, and sending up prayers. Hearing cries in our house these last couple of days reminds us of the long road it took to get these babes home, and how much worse for wear we would have been without all of you. Thanks, from the bottoms of our babies.
Sara & Nick
Perhaps you noticed that there are NO FEEDING TUBES in any of these pics! This morning the doc got a wild hair and told the nurse to yank ’em both and see how they did on just bottles all day. Nora made up a lot of ground today, trying like hell to catch up to her sister. She even took a couple full feeds (2 oz!) by bottle. I mean, I can’t really blame her. I’d eat a lot more if I didn’t have a tube up my nose anymore, too.
So all of this means that our little ladies are on the fast track to hittin the road!! The doc is going to monitor their feeding volumes and weight gains over the next couple days and they could be home as early as THIS WEEKEND! Yeah–we know. When we heard that we just about crapped our pants, too.
We’ll keep you posted….
Sara & Nick
The girls did some pre-surgery snuggling on Wednesday, serenaded by a lion cub dressed up like Erin-the-music-therapist.
Little Miss Bryn rolled up to the surgical floor with the stoicism of a soldier, and very little chance of being pried from mom and dad’s kung-fu grip.
After stalling as loooong as we could by asking the anesthesiologist 946 questions, we had to make a decision between a spinal block or general anesthesia. There were risks and benefits of going either route, and it was an almost impossible choice: intubate her tiny airway and use powerful drugs to put our girl to sleep, or carefully insert a needle between her teeny tiny vertebrae to numb her from the waist down, keeping her awake during the procedure. I asked the surgeon if he was sure we couldn’t just use reflexology or qigong to gently coax the hernia back in, and was he REALLY a surgeon or just someone DRESSED as a surgeon for Halloween, but he just snapped his gloves and looked at his watch (were my stalling tactics getting to be too much?). Despite my last 2 experiences with the spinal block (how could you forget??), we decided to avoid the intubation and drugs and go with the spinal for our girl. Something about the idea of her sucking away on her nook, eyes wide open, oblivious to the slicing and dicing going on down below was more comforting to us than the tube down her throat, which we’d already seen twice and were fine with never seeing again. Then it was go time, and we had to say goodbye to our little nugget. With her cute, innocent cheeks (hold up–did we have the right baby?? When did Bryn get cheeks??), I just wanted to eat her up. In my panicked state it actually crossed my mind that if I DID eat her, they couldn’t take her–HA! But we knew we had to be “strong parents” and so we let them rip her out of our Bryn-sandwich-vice-grip. Seriously, I can’t believe some parents have to do this multiple times with their kids. I’m already dreading her wisdom teeth removal in 16 years, and that’s just gas, right??
Nick and I settled into the waiting room and watched Giada make red velvet cake pops. A half hour later (what?? they can’t be done?! maybe they changed their mind because she was so cute!!) the surgeon came and said it was all done and she did great. He had shoved her ovary back in, sewn up the hernia hole, and then did the other side just in case–sweet, a BOGO! We waited another 8 years before she was out of recovery and we could finally see her.
Whew. Done. The rest of the day, it was like she’d never had surgery. She slammed an entire feed by bottle shortly after, and they pulled her IV out since she wouldn’t be needing any fluids if she was going to scarf down her own feeds. Nora looked on lazily from her side of the room, where a nurse was wiggling a bottle around her limp mouth (don’t MAKE me get out the sharpie, young lady!). She gave her sister a wink as she let her mother’s hard work dribble out the side of her mouth and disappear into her double chin. COME ON, NORA!!
Yesterday, the girls got a visit from their Great Grampa Saterstrom!
We know it wasn’t easy, but we’re so glad you made the trip, Grampa!
Since the girls are only 2 days away from their due date (!), and they have been such obedient patients, the nurse thought it was appropriate that they finally get some legit playtime. She ordered a mat, some blankets and some boppies and Bryn and Nora (ok, mom and dad) had the time of their little lives!
Sara & Nick