Wednesday, June 12th

From Facebook post:

Adjusting expectations is not easy.  First time parents don’t normally leave their newborn and drive away after they’ve watched 3 very amazing nurses quite literally save their baby’s life when her heart rate and blood pressure suddenly plummet for an unknown reason.  We know this “NICU life” isn’t going to be easy to get used to.  I can easily feel like “I can’t do this”.  And I really can’t. On day one I feel defeated after a great morning of meeting goals to get to my baby, to see her come through two surgeries beautifully... then to get held up by the work of sustaining her tiny but mighty life while she recovers, and the “bumps” that come along the way.  Every minute with her is so precious, so to have to leave her to go spend some time sleeping seems ridiculous.  We know in our heads it’s logical though, our bodies need sleep....so we left Annelise in the caring hands of her night nurse tonight, and got sleep at the Rainbow House.  These days are hard.  My body hurts, my heart hurts, and I’m collecting memories that I don’t want.  I don’t know where to put my thoughts when I’m trying desperately to keep the pain away, but there’s so much of it!  

So I don’t keep the pain away, because I can’t.  I do know that even when it hurts, God is here, in these hard moments too.  What I feel is “too much”, God is bigger than that.  All the things that could possibly go wrong today... God is bigger than that too.  My fight is not with the scary moments or the overwhelming feelings today.  I have a God who already knows what the day will hold, and my job is to love my girl, and get to know her and show her as much love as we can, while figuring out what parenting looks like in the NICU.  Annelise has already made it past so many obstacles.  She’s here and alive!  And we’re going to celebrate every part of that being alive, and push through the hard times because she’s more than worth it.

Thanks for letting me spill my guts this morning.  It’s actually quite helpful to try and update you all on the real time happenings, because it forces me to slow down and try and process what’s going on.  I’m going to try and stay in the moment today with Kevin though, so if there are no major changes, I’ll just post a recap of the day tonight.  Thank you for your continued prayers for our mental and physical health!  I’m so grateful to know and love my Lord who keeps us close when these times are hard, and sends us rainbows that end at the Rainbow House at the end of a hard day.

Our day was lifted up in prayer from our friends and family for peace and rest, and the Lord not only blessed us with a “yes” as far as a medically uneventful day for Annelise, but went far above and beyond my expectations for what the day could look like.  We spent some time connecting with an amazing couple at the hospital who also just had a baby girl with so many of the same issues as Annelise!  We also got to spend lots more time with baby girl since there were far fewer professionals hovering around her bed today.  She was doing so well that Kevin and I felt good about taking a break to the coffee shop... and to top it off... there’s a massage therapist employed with the hospital, and someone asked her to come in to see us, so both Kevin and I got massages at Annelise’s bedside! 🥰We had some sweet moments as a family plus awesome nurse, made her some footprints and a scrapbook page to decorate her room, and learned how to put breast milk on a swab and then use it to swab around Annelise’s mouth.  She stuck out her little tongue to taste it, and it was the highlight of my day!  That was until we saw her moving her legs by herself!  No idea what movement overall she’ll end up with as far as her legs go... but it was such an encouraging day, and in contrast with yesterday, made each sweet moment even sweeter!  Thank you friends and family for blessing us with your prayers and texts and love!  🥰

Tuesday, June 11

Facebook posts:

Baby girl’s belly button surgery was successful!  Surgeon actually said it couldn’t have gone any better! 🥰  Now she’s staying in surgery so the neurosurgeon can close up the Spina bifida opening in her back. 

Kevin is keeping me updated from the hospital.  I’m just waiting around and attempting to rest.  Looks like I can get out of here soon.  Can’t wait to hang out as a family of 3!

Today is a big day for procedures.  Annelise came out of her Spina Bifida surgery, and the neurosurgeon said it went well. 🥰 They are expecting that she’ll need another surgery to place a shunt to drain cerebrospinal fluid at some point in the near future... to which I think it would be really cool if she didn’t end up needing one!  🙏😎

The cardiothoracic surgeon came to see us about possibly doing her heart surgery as soon as next week! 

I finally found my feelings when faced with finally seeing my baby face to face!😍😭😍😭😍😭. She has been sedated for the afternoon after the surgeries, and has some diligent nurses working on her to set her up with all the wires and lines that she needs to get medicine with.  There has been some trouble finding veins that will work for what they need, since she’s so small!  I’m praying that they are almost done poking her, but I can see them attempting to be as gentle as possible, and I know it’s in her best interest.

It has been a long day!  I’m pretty exhausted and hope to just rest in her room this afternoon after they let us back in from her latest procedure.  Feels so good just to look at her.  Also really weird... this is the person who was punching me from inside my body yesterday 😍 Love her so much!

7 days, but no more counting! Happy birthday Annelise!

Things happened so quickly, at the non-stress test on Monday, the doctor came in and said that it looked like the umbilical cord really wasn’t doing much to provide Annelise with nutrients, so if we waited until June 17th to deliver, we’d be risking her getting weaker in the womb, and could possibly lose her.  So the decision was made to deliver that day!
Kevin was back at the Rainbow House starting his first day of working remotely.  He had just IM’d his coworker about the day, and then had to turn around and say just kidding, not going to work today, going to have a baby!
Since it wasn’t a complete emergency, I was allowed to go home and get Kevin (since we just have the one car here), pack my hospital bag, and then return to the hospital.
It was faster to get info out to people via Facebook, and I’ve really enjoyed reading the comments and being encouraged by knowing so many people are praying for us and already love our little girl!
I’ll copy and paste the fb posts here, so I can look back someday

June 10th

Surprise!  Annelise isn’t quite getting the nutrients she needs through her umbilical cord, so while she’s bopping around in there, they are going to take her out NOW... like I’m about to put a hospital gown on and get ready! Here we go!!!

She’s here!  And she’s amazing! 💖😍🥰 Annelise had to be intubated.  She was trying to breathe but was having trouble. She’s on her way to Children’s Hospital now, and Kevin will follow her there.  I don’t have stats for her yet, but I know shes a tiny fighter!  Thank you for praying, the c-section went super well, and I’m just focusing on healing fast so I can get over to the hospital and see my baby girl too!  They will put a live stream video on her later so I can watch her from my phone.  So thankful for her life!!  Thank you Jesus for this gift!


Facebook update for the win when there’s no time to blog!
Annelise: is stable and at Children’s Hospital of Omaha.  The plan for tomorrow is surgery to close up the Spina bifida opening on her back, and also, they decided that she has a hernia at the base of her umbilical cord (they were originally calling it an omphalocele, where part of her guts come through the umbilical cord... but then looked into it and changed the diagnosis) so they’re going to fix that tomorrow as well.  She’s on medication for her heart now, and on a ventilator, with good looking oxygen levels.  Her proud papa is with her now, but she’s doing so well, and has such a long day tomorrow, that the nurses advised him to go get some consecutive hours of sleep and come back super early for her 8am (6am California time) operation start.

Kevin: He had to reschedule his GI doctor appointments that were supposed to happen today and tomorrow, but was feeling better with the medicine that the doc had him try out.  I’m so grateful for the encouraging stable rock of a husband I have, and super thankful that the hospital communicated how long Annelise would be being undergoing tests and transfer stuff that he wouldn’t be allowed to be a part of anyway... he was able to stay with me all through the recovery room time, until I got to move in to my regular room.  That was awesome!

Me: I can feel my legs again!👍. I had a quesadilla and yogurt for dinner.  I haven’t felt nauseous at all!🥳🎉. I also haven’t cried at all, which is so unlike me... I feel like I’ve been in a “let’s do this” mode all day.  The Lord’s presence and peace has been very evident throughout the day, and I couldn’t be more impressed with this hospital and the care we’ve received.  ❤️
I’ve started to pump for Annelise, and will be continuing to give that a go.  There’s a real possibility that I might be able to be discharged tomorrow!  Hoping and praying that is so!  I just got up and walked for the first time since the c-section!  So that’s a good sign!

Bummer that the cameras at Children’s aren’t working right... they’ve ordered new ones, but they are down to 3 working ones and they are all being used 😢

Kevin and I Skyped tonight though, and it was so amazing to see this sweet girl of ours resting and calm.  It has been a weird psychological thing to know she’s not in my belly anymore... but to still not be able to see her.  Show me the baby!😍🤪. I’ll get there though!

Continued prayers for us would be for my speedy healing, Annelise’s surgeries and the surgeons tomorrow, wisdom for all involved in her care, and the next steps of heart surgeries and breathing/ eating hurdles.
We are so grateful for the village that is lifting us up.  The foundation of faith in God’s plan for Annelise’s life is made even more solid by the love of His people!  Thank you!

8 days and counting kicks

Really grateful for the answered prayer that Annelise is staying active!  I don’t have to wait too long for confirmation that she’s still kicking in there.
Today Kevin and I went to a new church.  We planned to go to the 9 o’clock service... but if we can’t ever seem to be on time for our 9am start at our home church... I don’t know why we thought the different time zone would change anything! 🤪 Anyway, we had a lovely time at the 11am service, which we arrived in plenty of time for 😁
We got lunch and used an AMC gift card that we were generously gifted.  Happy movies are what we want to fill our heads with, so we saw Secret Life of Pets 2.  It was entertaining and had a good message about overcoming fears!
We saw a promotional poster for that super ridiculous-looking movie that’s coming out that hilariously has my maiden name for a title!😂 Couldn’t resist taking a picture.
We had some down time and a walk, which included our favorite pastime of looking up these giant houses on Zillow and being so shocked at how cheap they are compared to California house prices!!
We have an appointment for Annelise and me in the morning, and Kevin tried out working remotely for the week tomorrow.  Onward day by day we’re doing it!

My amazing friend who is house sitting for us sent me this picture of our cat.  She seems just fine and acclimated to life without her old people!  The movie we watched also reminded me that as long as she gets fed, she’ll be fine 😻

9 days left

No new info in this post.  Just a way to document the day for the future when I inevitably look back on this time and forget what life was like before Annelise’s birth.
We’re trying to do as many fun things as we can before NICU life begins.  Today we took a walk in the sun... not too humid yet, but definitely hot!  We painted some pottery in the afternoon, and I’m really happy with how both of our pieces turned out!

We ended up with laundry being our evening activity.  It has been a whole week that we’ve been gone already! I’m feeling good physically.  Annelise has been moving quite a bit, which I love, because each bump is a confirmation that she’s still kickin’ in there!  

C-section Scheduled

We got some new information at the ultrasound we went to yesterday morning.  Annelise has gained a little bit of weight since last week’s growth check, so she’s guesstimated to be 4lbs 2 oz now.  Her head still appears to be very small.  There is still some time in the womb for her to grow... but that leads us to the status change and new plans for her care.  They use Doppler ultrasound to check the flow of the umbilical cord.  This is the first time that the cord flow has been “abnormal”.  If there was no flow, or reverse flow found... that would mean they would deliver her right away.  Right now it isn’t to that point, but they will monitor it twice this next week, and plan to deliver at 37 weeks. Doctors make decisions based on statistics, and usually once the cord starts to wimp out, it’s important to deliver the baby before it quits altogether, because the cord is her lifeline right now, so the risk of stillbirth increases as the cord flow gets more abnormal.  If the cord isn’t working at optimal strength now, they also don’t expect her to be able to grow much more... so leaving her in there now will not likely produce a chubby baby, and only increase the risk of her not getting the nutrients and oxygenated blood that she needs to live.
Soooooo, that means that she’s got 10 days left to grow as much as possible in the womb, because right now a c-section is scheduled for June 17th! 😳We reach 37 weeks gestation on a Thursday, but I like the MFM's reason of waiting for Monday if we can, so that all the specialists will be in the office all week to watch her.
She is breach right now, and I’m not interested in stressing us all out by trying to turn her to be head down for a regular delivery.  If God wants me to go for the vaginal delivery, He and Annelise can work that out to have her turn herself by the 17th.
Kevin and I got a tour of labor and delivery at Nebraska Med, where I’ll go to deliver.  It’s less than a 15 minute drive from the Children’s Hospital, but I can already anticipate that it will feel worlds away from our girl when she’s taken to the NICU at Children’s, and I have to stay and recover from surgery.  Kevin will be with me during the C-section. As much as I know I’ll need him during that moment, I will need to know that he is with Annelise once she’s here.  He has promised to drive safely from one hospital to the next!  There is a “resuscitation room” next to the OR, and that’s where  she will be stabilized, and the little transportation incubator will be waiting for her.  There is a possibility of her being able to spend some time with me if she’s doing amazingly, but all that will need to be determined once she gets here and has to breathe air.

We took an afternoon to recover from  the new information and c-section date.  This has always been a possible scenario, and happens quite often with babies who have trisomy 18.  We’ve been given information and been wary of my wonky placenta throughout the pregnancy.  Somehow though, when one of the possible future scenarios turned into the one actual reality... it hit us like a ton of bricks! We took some time to pray, tell our fears and feelings to the Lord, and recognize how much He is part of this story.  We don’t get any new insights about what’s going to happen and how it will all work out when we pray, but by spending time remembering  how powerful and good God is, how much we know He loves us and Annelise, what He has already brought us through and how He has gone before and prepared us and the people that are walking through this with us for this season... that’s where the peace comes from, that we can trust the Lord to hold us and sustain us through whatever the struggle might look like.  We still pray and ask for healing of Annelise that would be considered a miracle, because we love our baby and want the most comfort for her as possible.  If the Lord heals her in amazing ways, or if He has other plans for her future, we trust that He is using her life and will continue to be glorified through her story.  We are being changed because of her, that’s for sure!
To take care of our mental health after the appointment yesterday, we got a pizza from a little pizza shop that we found and loved the last time we were here, and took it to a nice park with lots of trees.  It was quiet and felt like we were out in the woods.  I’m so grateful for the time to process and think about what’s coming... while I wanted to go as close to full term as possible, it’s also nice to have this time to prepare.  It would have been much more stressful to find out I had to deliver immediately!

Prayer requests:
The next 10 days:  Please Lord use the wonky umbilical cord to deliver enough nutrients to Annelise to help her to grow for at least the next 10 days, especially her little head.  Yes, I'm asking for a big headed baby right before I deliver her, it's that important for her little brain to mature and grow.
The delivery:  Regardless of how it happens, praying for safety for myself and for Annelise during delivery.  There's no way to make the delivery "boring", like our drive... but I'm praying for as typical and healthy a delivery as possible.  Praying also for Kevin's peace of mind during the delivery, having to watch the people you love being worked on by surgeons and doctors will be a big deal, I'm sure.
Breathing: Asking Jesus to give Annelise the ability to breath room air on her own

Update on Kevin's GI specialist appointment today:  Good news!  The GI doctor took a look at his labs and asked some questions about symptoms and past health history.  He doesn't think that there's a problem with his pancreas, because even though Kevin's lipase levels have been elevated beyond the "normal" range, the other markers in his bloodwork that would indicate an issue are normal.  Hooray!  He has scheduled an abdominal ultrasound for next week, just for peace of mind, which I appreciate!  And he's also set Kevin up for a test to find out if he is for sure lactose intolerant, which will be good to know too!  It will be kinda funny for me to go to Kevin's ultrasound appointment with him next week after all the times that Kevin has been sitting in the chair while I get an ultrasound over the past months.

Well, I wrote the blog about the scheduled delivery... I guess that means it's really real and this is happening!  So weird to not be just planning for the future possibilities... but to be able to see the date on the calendar where we'll get actual answers to the question of "how is this all going to happen?"... and then I'm sure as soon as we get those answers, we'll have a whole new list of questions.  Thank you family and friends for holding us close in prayer and love, we really have the best people.  💖

The new, not quite, normal

The waiting phase has officially commenced now that we’re here in Omaha and there’s no more need to plan and pack for the cross country move.  We’ve slept a lot!  I feel like my body knows it can finally relax, there’s no back of my mind subconsciously worrying about going into early labor in the middle of nowhere😅.
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!💖

Kevin was really excited about free Chick-Fil-A😍