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😍

Hello, From Omaha!

We made it!  We’re at the Rainbow House in Omaha!  The drive was actually great, beautiful weather for the most part during the drive.  Just got one experience with real northwest weather and I don’t much care for driving in the dark in a new place when it’s raining so hard you can’t see the lines on the road.  We quickly found shelter from the rain and lightening at a hotel that turned out to have a delicious continental breakfast this morning, what a bonus😁
I feel so relieved to be here!. We will deliver Annelise in Nebraska, Whoohoo!   We didn’t have to deliver in California and then transfer Annelise here, I didn’t go into early labor on the road and have to stop at a random hospital!
We’re taking some time to rest now, but I wanted to update everyone that we had a good trip and we are so grateful for the Lord seeing us safely out here.

You can see the Children’s Hospital from our 3rd floor room at the Rainbow House. It’s where those cranes are.

See you later, home!

I’m laying here in my comfortable bed for the last time in awhile... wondering if we’ll be gone months and eventually return home to put Annelise in her crib to sleep at night, or if we’ll have to come home much sooner without her.  I can feel her moving around right now, very much alive, and it makes me not want to go, and just keep her like this forever!  But I also can’t wait to hold her, and I’d rather hold her in Omaha where she’ll be taken care of for the valuable person she is, a life worth saving, so I guess I better get up so we can hit the road!  I can’t help thinking about what could go wrong, but I can remind myself that the “what if’s” are not our current situation, and to look for the joy that I have right now.  We’re at 35 weeks and on our way to Omaha!
Our last CA doctors appointments went well, and we got a really sweet 3D image of Annelise.  I love that she’s getting chub in her cheeks!  She’s still measuring small... about 4 weeks behind typical development now, but she’s growing on her own curve, and is estimated to be at 3lbs 12 oz now!

We’ll plan to get as close to Salt Lake City as we can tonight.  There’s a Children’s hospital there that has been spoken highly of in the Facebook group of trisomy parents that we’re a part of, so I’ll feel more comfortable staying closer to a good hospital... Kevin mapped out 18 hospitals on the way to Omaha!  Praying we can feel good that we’re prepared, while we breeze past them all!

See you later, home, friends, and family!

I miss my cat already.

1 More Week in California

We made it to 34 weeks this past Thursday!  This is our last full Saturday at home, and time is flying!
I’ve been working in our backyard to try and tame our giant bougainvillea, as well as other plants, so that they can have plenty of room to grow back while we’re gone.  This is where my sense of control has been focused... since there’s not much else I have control over in life right now, I’m claiming control of my plants!  The bougainvillea is resisting, but Kevin is also on my side, and he can climb the ladder, so it will all work out :)

  


Kevin says he wishes he planned more for my first Mother’s Day, but he worked all afternoon to put in a drip irrigation system in our front yard, so I can be confident that the front plants will be watered regularly... thereby contributing to my sense of control over the garden.  Now what could be more romantic than that??😍
I realized on Mother’s Day that I have no clothes to bring with us for Annelise.  No photo props or anything.  As of her last couple ultrasounds, she was estimated to be about 2 1/2lbs.  So I ordered a few premie and NICU friendly outfits for photo opportunities.  They have been delivered, and they are precious!
I have specifically not wanted to have a baby shower for Annelise, because although she is celebrated  and worth celebrating, I’m strategically avoiding the possibility of receiving cute baby girl clothes that are just for her, and then having to put them away if we find that her story does not include coming home with us.  It was hard enough packing our foster baby boy’s clothes up for him to take with him, thriving to his new home with family members..with his Christmas outfit with the tiny bow tie from a dear friend,  that we never even got to see him wear... I just didn’t want to set myself up with the possibility of having to decide what to do with all of her clothes, especially earlier in the pregnancy, when we weren’t in this exciting and terrifying spot of being so close to delivery! So with the amount of challenges on this road that we’re choosing to face head on... this is one that I’m totally okay with avoiding on purpose.
The self preservation attempts were at an all time high a few weeks ago, as well as my anxiety and blood pressure, so Kevin and I made an appointment again with our counselor.  I went to her hoping to find some tool or psychological tip that I was missing, so I could use it and get my mind and body in a better place.  Our counselor is one of the most intuitive people I have ever met, and she packs a lot of wisdom.  What we both left with was permission (I didn't know I needed it, but sure felt better after I got it) to have a hard time with what's going on.  I didn't get my missing tool to make it easier and faster to process the anxious feelings, but just recognizing and accepting the mess and being okay with not being okay with all the big things going on and impending... made a big difference.  I can be sad because my baby is sick.  It doesn't mean I'm not trusting God correctly, it means I'm feeling the feelings that God gave me, that are appropriate for this situation.  I'd like to not access the feelings of being overwhelmed and scared of the pain that could be in the future, but I know that through wrestling and struggling through the balance of feeling the human feelings that come from my limited mind, and trusting God because of what I know about Him, being the creator of my entire limited mind, and the one I can trust with my future and my now, this struggle will eventually lead to the Lord's peace calming my heart, and His glory for what He's doing in Annelise's and our lives.

I spend a lot of time being what I call realistic... but what that really often means is I'm spending time collecting worst case scenarios.  It's what I tend to do naturally... it helped in 8th grade when I decided NOT to cut school when I really hated going... because in my head I just knew something terrible would happen if I did, and my parents would have no way of knowing where I was... so on the bus I went, to avoid that terrible scenario by going through with the less terrible school day.  But now, especially since we've made it to 34 weeks!  Something I didn't let myself dream about for too long at 20 weeks... I'm trying to do things a little differently to see how it turns out.  What if my "what-ifs" include "What if she comes out and her spinal lesion is actually covered?"  "What if I'm able to have a normal vaginal birth and she doesn't go into distress?"  "What if her insides are hooked up the way they should be?"  Because for the sake of being realistic... those things could totally happen.  They would defy the statistics, but they have happened for babies with Trisomy 18 before, and they will happen again I am sure.  I'm longing for the day when we'll know how she responds to life outside the womb, at the same time though, I'm so content to just leave her in there!

Kevin and I are both getting practice with replacing the worst "what-ifs" with trust and patience to wait for God's word on what He has planned for our lives next.  Just this week, Kevin heard from his doctor that the 2nd round of blood work that he had done showed that his Lipase levels in his pancreas are increasing, and above the normal range, so he has been advised to see a GI specialist.  We were able to get an appointment with a GI specialist for the first week that we're out in Omaha, thankfully!  Also this week, he had a follow up to a root canal that he had done last year, and there's something wrong with the tooth, so it will have to be replaced.  It's not causing him pain, so his dentist said that it can be put off, but will eventually have to be fixed.  So thankful for the chapter of our book by Max Lucado "Anxious for Nothing" that we had just read the night before.  It was about a contagious calm, and started off talking about how we can usually handle one thing going wrong in our lives, but how much harder it is to trust the Lord when multiple battles happen at the same time.

Here are some tips on how to achieve the calm during multiple storms from the book:
Celebrate God’s goodness (Philippians 4:4) Ask God for help (Philippians 4:6) Leave our concerns with God (Philippians 4:6) Meditate on good things (Philippians 4:8)
“Peace is within reach, not for lack of problems, but because of the presence of a sovereign Lord. Rather than rehearse the chaos of the world, rejoice in the Lord’s sovereignty, as Paul did.” 

That's the goal we are on the road toward.  Not walking perfectly, but we have the aim.


In happy news, we took the suggestion of an amazing friend and went to get a 3d ultrasound done!  I don't know why I didn't think of doing that.  Maybe because of all the ultrasounds I have been getting regularly.  I'm so glad we went to the mall on Thursday to have this ultrasound experience.  It was so incredible to just watch her on the screen for the sake of discovering what she looks like in there... not just to diagnose a defect or check for growth.  Annelise cooperated really well, and we got to see a lot of her sweet face.  There was even a moment when we were talking with the woman who was doing the ultrasound about how her little brother was diagnosed with Spina Bifida, but he is actually able to walk.  I mentioned that we'll have to wait to see what kind of movement Annelise has, and that her spina bifida has caused her to have club feet, and at that moment, Annelise brings her whole foot up near her head into the sonogram field!  Such perfect timing, as if she was part of the conversation! 😆
This is a long video, the appointment was 20 minutes.  If I had the editing skills to just pull out the cutest parts, then I would.  But that's not the case!  Watching her move around, open her eyes (I was not expecting that!  Did you know they open their eyes in there??) and move her little fingers was an amazing experience, and I'm so glad we got that time with her, and that we can relive it with the video they gave us.  There is so much life in this little girl, and we love our little fighter so much!

I'll try to sum it up - We're going to Omaha!

Hello everyone!  After the information dump in my last post, I'll try to give you a break and be concise here to give an overview of the main things happening now.

• Our plan is to deliver at Children's Hospital in Omaha, Nebraska.  Trusting God will work out the details of a house sitter for us.  We already have church family volunteering to mow the lawn and help us figure out how to best look after the house. 

• We'll have a concurrent plan for delivering at Miller Children's Hospital locally, just in case there's a medical reason that pops up quickly that would prevent me from traveling before delivery.  It's impossible to know at this point if the heart surgeon at Miller Children's is on board with surgery for Annelise, because I won't get to meet him until after our cardiologist appointment here on May 21st. I hope he would agree to surgery, but I also hope nothing will keep us from delivering in Omaha.

• Annelise's growth will be monitored here, and the results sent to the Maternal Fetal Medicine (MFM) specialist in Omaha.

• We will plan to go earlier than my due date, and stay near the Children's Hospital in Omaha, at a Ronald McDonald-type facility, until she's ready to deliver, or stops growing and they're ready to take her out.

Annelise's biggest health concerns continue to be the spina bifida lesion, the two issues in her heart: VSD and aortic coarctation, then the rest will be determined after she is born.  We're always praying for Annelise to be shockingly healthy!  That could include things like breathing easy when typically babies with Trisomy 18 require breathing assistance... feeding easier when typically they need feeding assistance.  Seizures are something that I would be so happy if she did not experience.  There is a kind of cancer that develops later in many kids with T18's liver, so praying that stays away, and basically welcoming any blessings that would make her life more comfortable.  We don't know yet how much, if any use of her bowels and legs she will have because of the Spina Bifida.  We will absolutely love and adore Annelise at any level of health she has, but God tells us to present our requests to Him, and I'd love for my little girl to live, and live as comfortably as possible, so that's what we pray for.  

Want to see an amazing video I found about Annelise's heart surgeon, Jim Hammel, from Omaha?  I was being lazy and trying to use the internet to find the contact info for his assistant (instead of opening my purse to get her card that I know is in there!) and found this awesome news segment from a few years ago about the surgeon leading a team to go down to Mexico and volunteer time to repair kids' hearts!  

It overwhelms me how this one man's skills and his compassionate and caring heart are changing outcomes for families in multiple countries.  Not to mention, Lord willing, my family and our baby girl!  I'm praying for his work/life balance, and that he'll see Jesus his savior at work daily in his life, if he doesn't already.  Praying that he can continue this work and the teaching that he gives to others will just multiply the numbers of cardiac surgeons that operate like Dr. Hammel.  Such a cool guy!

Omaha Surgeons in Mexico
Another article about Omaha Surgeons in Mexico

We sang this song at church this Sunday and my eyes were not dry!

 This is a new favorite that I found while I was looking for the other song online. I'm putting this on my playlist because it's exactly what my heart needs to sing in the moments when I AM afraid.

Final day of Nebraska talks

Hello! I’m writing this update from the plane.  We’re on our way to our layover in Las Vegas.  I wore my Sharks Hockey shirt just for the occasion.  I think it shows how much better of a day today was, that my brain was free enough to plan my wardrobe in order to gloat a little about my team beating Vegas in the first round of Stanley Cup playoffs😊.  

We started off the day with a tour of 

the PICU, where Annelise would stay after heart surgery, and the NICU, where she would stay when she no longer needs to be in the PICU.  We met with a social worker who just works with the NICU who asked us all sorts of questions to get to know us, spending the time, even though she was aware that we might not even end up coming to their hospital to deliver.  We were very impressed with how comprehensive the program they have at Children’s Omaha is.  They are so organized, all of the specialists know each other and have worked with each other before.  They talk about how this program is new and they are trying to make it better for all the people finding that they need to come from all over the United States.  It’s so sad that they are so far away from many folks that need them, but it’s really encouraging that they are embracing the opportunity to fill the unmet need of babies who need heart surgery and have Trisomy 18 but are denied elsewhere based on just the diagnosis of Trisomy 18, and not for an actual medical reason.

There is still a possibility that we could finally meet with the heart surgeon at Miller Children’s Hospital in Long Beach and he might say yes, he’d be willing to do a repair for Annelise’s VSD and the new problem of the aortic coarctation.  I’ve heard from families that the heart surgeon from Miller Children’s has denied surgery, but I’ve spoken on the phone to a cardiologist here who says he has done surgeries on babies with trisomy before... so who knows?!  That’s part of the problem with decision making... we have a sure thing in Omaha that would mean months away from our home and support system.... or a possibly very capable team here at home, but we haven’t met the people on the team yet that would perform her surgeries, so there are always those questions of “who are they?  What have they learned about trisomy 18?  If they have learned in school what most doctors have, that trisomy 18 leads to death shortly after birth... will their perspective lead them to actions of recommending comfort care only and not performing surgeries?”

There is still a very real possibility that Annelise won’t make it to being born, or she could have surprise things wrong with her that will make it harder for her to survive than we anticipate, but it is encouraging to hear that data is showing that when heart issues are repaired, and measures are taken to ensure that the baby is getting adequate oxygen (like a tracheostomy) and they have proper nutrition (sometimes needing a g-tube to be fed through), they can live and have a place with their families that love them.

Sounds like an overwhelming home life, right?  That’s part of the struggle in my head right now.  I’d prefer none of those extra 10,000 steps per day that it will take to care for this girl of mine.  It’s going to be a major loss to mourn because I will miss out on the typical baby time.  I want to be able to put her in her car seat easily and take her places without oxygen attached to her, not to have to be obsessively vigilant about germs that could cause major issues for her lungs, to feed her wherever I am easily, and so on and so forth all of the typical infant experiences that will be different with this girl.  But I want this girl so much more than I want my dream life.  I’ll take her with tubes attached, billions of extra tasks per day, and an altered milestone schedule that will just be hers.  She’s worth it, and Jesus made her just for us.  I’d be honored to have the chance to care for her and bring her home!  That’s the new dream.

There was good news at our neurosurgeon appointment this morning regarding results of the fetal MRI yesterday.  The neurosurgeon said that although her head is small, the ventricles in the brain look good and he has seen no indication at this point that the parts of her brain wouldn’t continue to develop.  He said the different shape of her head (like a lemon.... that’s the technical description!)  is due to the Spina bifida issues, and not an additional problem with brain development as the MFM specialist had been concerned about yesterday.  He had discussed the concerns with the MFM, so she also told us about the change in prognosis when she saw us at the end of the day.  I appreciated her taking the time to basically tell us she was incorrect and she also told us that she consulted with the neurosurgeon and found that the symptoms she was concerned about are results of the Spina bifida, and are “normal” parts of Spina bifida issues.

There was even talk about not ruling out her being able to move parts of her legs!  We’ll have to wait and see for that answer.  Also encouraging, is that he said it seems her Spina bifida lesion might be covered at this point, and not leaking cerebrospinal fluid.  He said that this could always change because the covering is the consistency of wet tissue paper, and as she gets bigger there’s more chance to aggravate it in the womb, but good news for now.

We also met with the coordinator for the palliative care program in Omaha...she was also interested in our wishes, and what “quality of life” means to us, and our thoughts on what it would mean to relocate to Omaha for a possibly long term stay in the NICU.  

Almost finally, we got to meet the heart surgeon who is basically the whole reason for us to travel out there!  I have watched his YouTube video about trisomy 18 heart defects so many times and seen so many Facebook posts recommending him, that I felt like I was meeting a celebrity 😄.  He took us through a personal version of the YouTube video that I had watched... and I’m so glad I did that studying, because I was almost able to totally follow what He was saying.  The plan would be to give Annelise an echocardiogram after she’s born to get a clearer look at her aortic arch, then let her go for surgery for her Spina bifida... and then soonish after that, do her heart surgery, all the while monitoring how she’s breathing and about a million other things that I don’t even remember, but am glad is part of their work up of her!

We ended the day with a “care conference” where most of the specialists we met with came together to give us recommendations and talk to each other too.  That’s where we saw the MFM again.  They didn’t pressure us in any way to deliver there, but I left feeling like we were treated as if we lived there and would be coming back forever.  They really are exceptional humans, and I’m glad we made the trip!

I should have made this post into chapters, it’s so long!  But today was a long day, and I have a terrible memory, so I’m sure I’ll be reading this post later to remember all that happened!

We’ve decided not to make a decision yet about where to deliver.  We still have some weeks left (but only 6!) until they suggest I get back out there because trisomy babies tend to come earlier and sometimes in an emergency type way like me having preeclampsia with severe features, at which point I wouldn’t be able to make the trip at all!  Which is another reason that I want to further my relationship with Miller Children’s Hospital specialists... because we could end up having no choice but to deliver here in Southern California!  

We’ve definitely stretched our faith muscles this trip, and at the end of it, I’m confident that we’re looking for where God wants us to be, and that He’s with us wherever we end up.  To be continued, I wonder where that will be!!

Omaha Day 2

Day #2 of appointments in Omaha was filled with more stressors than day one.  It started off nicely with an anatomy scan where we got to see Annelise’s sweet profile and a pretty good 3D shot of her face, and her little cleft lip on the right side of her face (we MIGHT be able to find out if she has a cleft palate also with the results of the fetal MRI... or we might just have to wait and get that info when she’s born).  The maternal fetal medicine (MFM) specialist we met with to discuss the results of the scan echoed the physical issues that we already know about, plus added a larger degree of concern regarding her continued small head size.  Her head growth is a week further behind in growth than the rest of her body, which is 2 weeks behind typical growth already... almost qualifying her for a diagnosis of microcephaly, according to the MFM.  This would mean that we can expect even more developmental and cognitive delays than we were already being prepared for because of the trisomy 18 diagnosis.  With the added possibility of neurological issues like seizures.  She thinks there may be some “cord tethering” in her spine, which I don’t know much about except that it’s an issue in addition to the Spina Bifida.  I can’t think of a good describing word other than just plain sad when describing Kevin and my response to thinking of our baby’s brain not working for her, and possibly bringing a host of neurological issues that we haven’t even thought of yet, on top of the realistic prognosis that we’ve already been overwhelmed with.  I was floating on the edge of all my emotions on the walk back to the car after the appointment.  We walked up the stairs of the parking garage, and the door slammed behind us super loudly.  We both jumped and I started laughing at us... which gave way to tears and sobs that made it hard to catch my breath.
I’m infinitely thankful for the amazing husband I have who is right there with me during these moments when I can feel my heart breaking for our girl, and for our family.  We sat in the car and just expressed to God our inability to understand what He’s doing in this situation, and just lamenting our sadness in it all.  The Lord in the way only He can provide, somehow provided some comfort and peace as we recognized that this new detailed concern about her brain is not a surprise to Him.  He showed up to the appointment with us today as our comforter, He didn’t need to wait for ultrasound results, He is still the one in charge of making Annelise, and she is still the Lord’s before she is ours.  New challenges won’t change our view of the value of her life, and the desire to get her the best medical attention that we can get for her!  Plus, how many times have you heard somebody tell their story that starts out “the doctors thought he/she would never.... but just look at them now!”  Even with a serious opinion about what might happen, we really will not know what Annelise can do until she’s here and trying to do it.
The second meeting was with a neonatologist from the hospital.  She wanted to meet with us to find out what information we already knew about Annelise’s condition, what we knew about possible outcomes, and a general overview of the hospital’s trisomy team and some of the things we can expect if we choose to deliver at Children’s Omaha.  She was a direct but upbeat person, and another moment where I am just so thankful and impressed with these folks that are clearly living their passion.
The afternoon ended with my first MRI experience.  I chose to watch the movie “Cool Runnings” while I was in there.  They explained everything before they did it and I felt pretty relaxed with it all up until the moment when I went into the tube and that little voice inside my brain that has been so obnoxious lately whispers “I wonder if I’m claustrophobic.... it would be pretty bad to be claustrophobic right now because I can’t move... like even if I wanted to move I could not... what would a panic attack look like in an MRI machine?  How embarrassing would it be if I can’t calm down and they can’t get these pictures of Annelise because I’m freaking out... I feel like freaking out...”. The techs came over the speaker and asked how I was doing so I told them I was feeling anxious but I want to try and power through.  One of them offered me a button to hold that I can squeeze to communicate with them and let them know if I need something... and as soon as I had that piece of control over my communication... I could calm down.  Brains are weird man.  I never even used the button and got through it!
We were blessed with dinner funds from some of our friends at home (thank you!!), and after taking a walk in the very green park we found, had a really delicious Thai food dinner at a restaurant recommended by the amazing woman who coordinated our whole weekend for us.
I then ate my feelings in the form of Starburst sour jelly beans, on sale at Target, and am feeling the sugar crash now.  Kevin and I have spent the evening trying to relax from the day so we can be ready for tomorrow’s meetings and travel home!  I can’t wait to sleep in our own bed with my giant pregnancy pillow!
Thank you everyone for your prayers, loving texts, and just loving us through this season of unknown.  We feel really cared for by our people!
I’m continuing to pray for baby Annelise to be shockingly healthy, and for Kevin and I as her parents to be able to entrust her future to the Lord, and look for God’s plan for our family above and beyond our own.
Love this little girl!