We’re staying at the Rainbow House down the street from the Children’s Hospital. The plan is to stay here until we’re ready to go home. The guesstimate is a 3-4 month stay due to multiple likely surgeries after Annelise is born. We’d be totally okay with getting to go home earlier with a shockingly healthy baby, and we’ll leave room for God’s plan for her life to include miracles and amazing healing... so basically, the plan is that there is no plan... we have “possible scenarios” that we discuss... and then have to let go because we just don’t know what will happen or how. (I wrote that like it’s an easy thing to do... the sentence is simple, and I used the words I wanted to... it’s just that the real life application of “letting go” isn’t as simple as writing the words all the time! But I’m working on it!) But in real life, what part of our lives do we reeeeally get to have control over? I feel like this season has brought to my attention just how much control I THINK I have over my future, but nah, I’ve got plans for multiple areas of life, and can be for sure about what the actual outcome will be in 0% of them. Like, what mom gets to experience her exact birth plan the way she wrote it? I bet it does happen sometimes, but more often than not, you just go with the flow as it happens. Sometimes you get the at home water birth you ordered, sometimes you have your baby in the car in front of the hospital, sometimes you get a surprise c-section!
I’m hoping that the Maternal Fetal Medicine (MFM) specialist appointments that I have coming up will give the doctor and us some wisdom as to how to start planning our options for delivery. As of right now, the neurosurgeon recommends a c-section due to a study that finds more kids with Spina bifida able to walk as they get older after c-section than vaginal birth. I’m going to see if I can find that study, because I’ve read others that don’t show much of a difference, and I’ve had all the MFM’s that I’ve come in contact with say vaginal birth is still a good option. She’ll be small for her gestational age though, and often other mom’s of T18 babies have had emergency c-sections due to the babies being distressed and losing heart rate with contractions. I have a friend that suggested seeing if they can try for a vaginal birth in an operating room, so there would be no time lost if we had to switch to c-section. I think that’s an awesome idea. I feel like at this point, trying for a vaginal birth gives the Lord the chance to bless me with a successful birth for Annelise, which will be very amazing because that means I can get out of the hospital faster.... since we’ll be delivering about 10 minutes down the street at Nebraska Medical Center... then Annelise and Kevin will be whisked away to the Children’s Hospital. If a c-section is warranted, I’m not opposed to having one... so if she stays breach, or doesn’t do well with little contractions, we’ll just go ahead and go for the cesarean.
When Annelise is delivered, they’ll assess her breathing needs and vitals and all that to get her stable, then the plan is to get her an echocardiogram to get a better look at her heart. They are anticipating needing to keep her PDA open with medication as a result of expected thin aorta not carrying enough blood from her heart to the rest of her body. Once that is confirmed and started, if she indeed does need surgery to close the lesion for her Spina bifida (again, saying IF because I’m leaving healing options open for the Lord to write a different story for Annelise... not requiring surgery would be shockingly healthy considering her mri and ultrasounds). The Spina bifida surgery would likely happen before 48 hours after birth. She’s already measuring big enough so that the surgeon isn’t worried about her not having enough skin to do the closure, Whoohoo! After the Spina Bifida surgery... heart surgery is the only planned surgery at this time, but the common surgeries for babies with T18 are g-tubes, tracheostomy to put in a more permanent trache (but it’s possible for some kids to grow out of needing the trache later in life), and intestine surgery could be needed... but all of that will only be discovered to be necessary or not once she’s born and breathing/ eating and pooping starts, then we’ll be able to see where her strengths and medical deficits are at.
Kevin and I ran errands on the first day here and got a mattress topper for our Rainbow House bed, which makes sleeping so much nicer! We loaded up with snacks and food, then went to the post office to get a PO Box so we can have our mail temporarily forwarded here. We’re expecting bills only, so if anyone wants to send us a note via snail mail, we’d love it!! You can send it to the Rainbow House directly, or we’re at
P.O. Box 24433
Omaha, NE 68124 😊
Kevin will start working remotely next week until Annelise comes, but has taken this week off, so today we decided to have as much fun as we could, and went to the Omaha Zoo! Then got some frozen yogurt, and arrived back at the Rainbow House just in time to see the Chick-Fil-A catering van pull up, because Chick-Fil-A donated meals tonight for the Rainbow House! It was the best day!🥰
Tomorrow we’ll meet the MFM specialist and have an ultrasound. Kevin will see his new GI specialist on Friday, and then we’ll have made it to our first weekend in Omaha. Friends of friends through Cru, have ties to a church out here, 11 minutes away according to Google maps, so we’re going to go visit and see what Nebraska church is like :).
It has been hot, in the 90’s, but not too humid yet. Everything is green! There are so many trees and grass here! It’s definitely not my home in California, but it doesn’t seem so bad. My favorite quote from strangers at the zoo today while looking at the giraffe/ostrich/rhino habitat was:
Little girl looking at a giraffe: “Mommy, he’s probably thinking, Why am I in Nebraska?”
Mom: “haha you’re right, he is probably wondering why he’s here... I ask myself that question too every day....”
🤣🤣🤣
This is the entryway of the Rainbow House, with butterfly art hanging over the stairs.
Omaha Zoo and Aquarium
Frozen yogurt next door in Iowa (cheesecake and Oreo cone for me... did you know that Kevin is the kind of guy that will choose 4 different flavors and as many toppings as he can fit in the bowl? 😆Love him, even when he combines blueberries with cookie dough topping!💖
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