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!

Coarc-what?

We made it to Omaha!  Had our first round of appointments today with a cardiologist.  We were supposed to meet with the cardiac surgeon today too, but he had an emergency surgery to attend to, so we will meet him sometime on Thursday before we come home.
God answered a prayer that I forgot to pray and blessed us with a sweet Annelise who moved to just the right locations to let the tech who was taking the fetal echocardiogram images geek out on some great images that were so clear she decided they would be good enough to go in a textbook!
The cardiologist was very personable, which not all doctors need to be, but is so appreciated!
Kevin noted the difference in the verbiage used by him vs. our cardiologist experience at CHOC.  Here in Omaha, the cardiologist referred to the expected issues and outcomes we might face for Annelise as part of her story, and gave us an array of options for medications to alleviate symptoms as well as surgical procedure details.  He went over some scenarios where surgery might not be an option, such as if thinning her blood to put her on the heart/lung machine would end up damaging her in other ways like brain damage... or if closing the hole in her heart would cause problems with pressure in the heart that would be just as damaging.  Never once was her quality of life questioned.  He also stated that any pediatric heart surgeon “worth their mustard” should be able to do the type of surgery/surgeries that Annelise will likely need.

He found to be true something that the CHOC cardiologist had wondered in the report that she wrote up too... whether Annelise’s aorta is narrowing on its way out of the heart, which would be called an aortic coarctation.  This issue could possibly go away as the anatomy of her heart will change as all babies’ hearts do when they are born and start using their lungs instead of getting oxygen from the placenta...  but if the problem persists after she’s born... the narrowing aorta won’t allow enough blood to get to the lower part of her body, and would create a need for surgery soon after she’s born, after she gets the Spina Bifida lesion closed.  Kevin and I had just spent the morning online learning about heart anatomy... but we didn’t run into this vocabulary!  So the large VSD and possible aortic coarctation are her main heart concerns.

 We didn’t feel pressured to come to his hospital, although he did speak very highly of the surgeon at Omaha.  The recommendation for next steps by this doctor is to follow up with a cardiologist in our area (who called me as we were walking out of the hospital today!  He heard about me from the team meeting that they had at Miller Children’s where Annelise’s case was presented, and reached out because he heard I wanted to meet with a surgeon.  He isn’t a surgeon, but he could be a cardiologist to care for Annelise into childhood if we get to know her for that long!  He sounds awesome and I’m excited to meet him at the next fetal echocardiogram to check out the size of her aortic coarctation in mid May).  After that appointment in mid May, if it still seems possible that she has an aortic coarctation, we’ll need to be sure to choose a hospital to deliver at where heart surgery is immediately available to her.  We are feeling really impressed with this hospital and the team that we’ve met so far.  What would it be like to live here for months though?  Can we find a surgeon “worth his mustard” close to our home who would also have great care for Annelise’s heart?
We’ll continue to look for those answers, and trust that our greatest physician, who can make anything happen, is present in our searching and will be with us and Annelise wherever we end up.

Nebraska, here we come!

It has been more of a challenge lately to take one day at a time when the days seem so full of planning and focus on the future.  We’re finding ourselves planning details for when Annelise gets here, that causes me to dream and entertain the idea of what it will be like to see her, touch her, and not have her with me always in my body.  But while we’re making plans for her arrival, we make simultaneous plans for what to do in the event of a stillbirth. I am constantly reminded that I’m part of the planning, but have no actual control over what the outcome will be as far as Annelise’s health.

 Kevin and I are considering delivering Annelise in Omaha, because the thought of a team that sees babies with trisomy 18 on a regular basis instead of just occasionally really appeals to me.  Although, I am happy with the staff that we have met so far at Miller Children’s in Long Beach, we haven’t been able to meet with all of the specialists yet, and so our feeling is that going to get evaluated and talk with the team in Omaha can only help us have a more comprehensive understanding of the issues that we’ll likely face after delivery.  We fly out on Monday!
We’re asking the Lord for wisdom and discernment.  There are pros and cons to both choices, and multiple logistics to deal with if we end up being states away from our house.... but this is the one time we get to see Annelise Faith be born, so I want to be confident that we’ve searched out God’s plan for His little one first, beyond our fears and anxieties about the details.

Side note, I met with the music therapist at Miller Children’s yesterday, and she made a recording of Annelise’s heartbeat💗 .  I ordered a little keepsake bear that will hold the sound box and play her heartbeat, kinda like a build-a-bear.

Here’s another favorite song on my playlist for y’all!

Since I have lots of opportunities to focus on every possible "what-if" that I can think of.... I appreciate the reminder that God is greater and stronger than anything that can happen to us in this life, and that He will be magnified and is already being glorified through the life of this baby girl, no matter if she spends all her days in Heaven, or if we get to know her here and share life with her.

Decisions, Decisions! A call from Omaha

Wow this seems fast!  I spoke with a coordinator from Omaha, and they’d like us to come out next week to meet the team, have some evaluations, and make a plan.  Then if we decide to give birth there, they’d want me out there at around 36 weeks.... best case scenario until she’s ready to go home!  I asked for more time to talk with hospitals here, or at least see what Stanford has to say, because we have a support system of family and friends in the Bay Area too... but don’t know anyone in Nebraska!  I cried to the coordinator on the phone as the thought of uprooting Kevin and I from our regular day-to-day lives to the middle of the USA for an undefined amount of time started to settle in as a real option of gigantic life changing proportion..  Poor lady on the phone.  She was amazing and my tears didn’t even fluster her, must be why she’s the one with that job! We’ll think about our game plan, pray, check flights, and get back to her this week.

I have a call in to Stanford’s Fetal and Pregnancy Health Program.  Waiting for the nurse coordinator to call me back.  I did find on the SOFT website (Support Organization For Trisomies... trisomy.org) that someone reported having a cardiac surgery done at Stanford in 2014.  The list is just based on people taking the time to report what surgeries they had, so it’s not comprehensive, but shows that at least one baby with Trisomy 13 or 18  has had heart surgery at Stanford!  Happy for that!

Decisions are not my strongest strength in life... far from it actually.  For example, while I’m feverishly scribbling down notes as the coordinator from Omaha is talking to me... I’m wishing that I had been able to make a decision about which planner I wanted to buy, because this new info should be going in the planner!  I can always transfer the info later though, and I’m confident that because we’re asking God for wisdom, that He will give it to us.  The wisdom I’m gaining so far, that has been growing in me through my adult life is that my thought process might not always be spot on.  Like if we choose to go to Omaha, it doesn’t mean that Stanford was a sub-par choice and this decision doesn’t necessarily just have one right answer.  Sometimes, or often, actually,  I treat big life decisions as if they are all or nothing.  But so much in life is about getting through the downs/cons and then taking time to enjoy the ups/pros that inevitably come with all decisions.  And it’s not like God is only in one of these hospitals.  He’ll be there regardless of where “there” is on the map, because we’ll be there and I know He’s with us.

So come on decisions, we can always change our minds later if you’re not working out for us, and with great change comes the great opportunity for anxiety... but also adventure!  This is one of those moments when I just get out of my head and trust the Lord with it, because if I want His plans for Annelise, I’ve got to be willing to go with what He might design, instead of sticking to my own plan that I’ve convinced myself is the most comfortable.


Love our people so much!  It fills my heart to know people are praying for us, even people we haven't met! I wanted to share some songs that have helped to hold my heart when it’s so heavy, and we’re shared with me by some of YOU!  Thank you!



This one hits home just as much about foster care for me as it does for my Annelise.


I love how someone else wrote a worship song that speaks just what my heart needs to say and hear.


Good ol' Steven Curtis Chapman! He's been bringing it since I had his cassette tapes! :)

After the Marathon of Appointments

It has taken a few days for me to post after all of our appointments.  I started to write a post that included details from our fetal echocardiogram and meeting with the cardiologist at Children’s Hospital Orange County (CHOC)... but as I tried to include my thoughts on all of the moments that honestly I’m still attempting to process... the post just got longer and longer and looooonger.  I’d love to have had the 3 appointments on Thursday, one appointment of Friday, and have a plan laid out and people on board to care for Annelise if/when we get to meet her here... but along with some answers, we just got a long list of more questions that will need some time to find answers to.

The major question we had, and a big reason for getting the fetal echo done at CHOC, was to meet a cardiologist there and see what she knew about CHOC and their history of repairing babies hearts who also have Trisomy 18.  From personal accounts that I have found via  blogs and the parents of Trisomy kids Facebook page that we belong to, I’ve read quite a lot about parents having a hard time finding surgeons willing to provide surgery for their babies, solely based on the T18 diagnosis.  I would want to believe that the medical professionals would only deny a surgery based on a medical reason, but it’s heartbreaking to read that around the country, parents are having the same experiences... like  some of the healthier T18 babies, who were born without anyone suspecting they had T18, are discovered to have heart defect issues after they’re born, so they were originally scheduled for surgery, because the team of cardiologists deemed them healthy enough to survive the surgery based on their assessment of the child... but then the test results come back positive for Trisomy 18, and the parents are left wondering why the care plan for their baby all of a sudden doesn’t include the surgery that earlier in the day was absolutely necessary, but after official diagnosis not even an option?  Here I go elaborating on my thoughts on the matter again.  I’ll try to just stick to the big ideas and things we’re asking for help in praying for.

- CHOC cardiologist that we met with said that in her 12 years at CHOC, no family with a T18 baby to her knowledge has ever been offered a heart repair surgery.  I asked her specifically if parents have requested heart repair surgeries and been denied?  And she nodded her head... citing the same “reasons” that appear in the articles I’ll tag in this blog for anyone that is interested in further reading.
- The cardiologist did not appear hopeful that the culture of CHOC would change for Annelise, but did get us in contact with the coordinator for a heart surgeon in Omaha, Nebraska that I was familiar with already, because I had seen a YouTube video he made about common heart defects for T18, and he has repaired the heart of a baby girl whose mama I was introduced to by the fabulous family of the sweet 3-year-old boy with T18 that we met some weeks ago.
- We’ve also had our info sent to Stanford, Lucille Packard Children’s Hospital, because the fine folks there have been cranking out papers addressing the issue of intervention vs. not providing intervention and noting the positive outcomes for babies who do have heart surgery even though they have an extra 18th or 13th chromosome.  I remember visiting my first nephew who spent some days in the NICU at Stanford, so we’ve actually somewhat had a tour already!  Nephew is awesome and thriving now, as a side note :).  I also trusted the grown-up heart surgeons at Stanford Hospital years ago to fix up my Dad’s heart.  I already love that place... it’s just 6 1/2 hours away from our house and life in SoCal that’s the problem!
- I was ready to walk away from CHOC altogether, but then on Friday we met the neurosurgeon who we really liked and said he’d be on board no problem to close Annelise’s Spina Bifida lesion if she can handle anesthesia.
- We could use some help praying for wisdom and discernment.  We’ll get some more opinions about the culture and climate of the heart surgery options for babies with T18 from other people at the hospital first, because I don’t know the cardiologist we met with personally... I can tell she’s brilliant about the heart... but I don’t know if she’s qualified to be the spokesperson for CHOC cardiology altogether.

The CHOC visit was supposed to last about an hour, but 2 1/2 hours later we rushed to the car in order to make it to our next appointment at Miller Children’s Hospital in Long Beach!  So thankful for a husband that knows I get hungry who packed snacks for us that became our lunch!  I’d say that the “feeling” of the room at Miller Children’s was day and the CHOC experience was night... it was so different to sit in a room with the perinatal connections coordinator, Annie, a NICU physician, a spiritual services coordinator, and  one observer who is finishing up her residency and wanted the experience.  We were informed that our decisions as parents of Annelise are respected, and their goal is for us to not even know what they would personally do in a situation, because this experience is about us and our decisions for Annelise.  Their job is to get to know our wishes for her, provide expected outcomes for issues so that we are informed, and then connect us to the surgeons and specialists that will work with us and help support our goals for Annelise’s treatment.  It was such a breath of fresh air!  There are still unanswered questions that prevent us from ending our search for a hospital with Miller’s though. They are a level 3 NICU, which doesn’t provide all of the support for heart surgeries that a level 4 NICU like CHOC can (if they would agree to, anyway).  I’ve also heard through other people’s personal experiences with the one heart surgeon that they have there that he might turn down a surgery for Annelise because of her T18 diagnosis too.  So again, while I hope that she doesn’t need emergency heart surgery right away, I don’t want to deliver in a location where I know she’s going to be blocked from receiving it if she does need it.  I won’t have the answers until we talk to more people though.

We spent a good while discussing our desires as parents in the event of a stillbirth, what to do if her heart stops beating, and a long mess of heavy situations.  We dragged ourselves over to our next appointment for a growth check at our OB’s office, and decided that an early Thai food dinner afterward would be good food for our souls after the day we had.  It was nice to see Annelise moving again for the 2nd ultrasound that day.  Also comforting to see her moving and recognize that I can’t feel it because of that dang anterior placenta in the way, but now I’ll have that knowledge in my head to hopefully slow down the worst case scenario thoughts that race into my head when I realize I haven’t felt her shifting around for a long time.  We got to see my favorite ultrasound tech again who tried her hardest to get a good 3D image again... but Annelise was relaxing with her arm covering her face and she wouldn’t move it!  Oh well.

 No pictures, please! 😆

Ways that you can be praying with us!
- Annelise is measuring 3 weeks behind in growth.  She has grown since last check!  But her little head could still use some catching up!  Praying for her brain to grow as typically as possible and forget about that extra chromosome.

- The neurosurgeon mentioned that if I don’t have elevated levels of alpha fetal protein in my blood, that could mean her Spina Bifida is actually covered by skin, so that her cerebrospinal fluid isn’t leaking out.  The blood test results that I have from my labs all say “normal” for protein.... so I have a call in to my ob’s office for someone to call me back and tell me what protein that is... because not having her spinal chord exposed would be an amazing answer to prayer when we ask God to “please fix her Spina Bifida so it’s not an issue we have to deal with right away”.  It’s a good reminder to me, even if she is born with an exposed spine, that yes, that is something that God could totally do, which is why I ask it of Him.  He wants to know my heart and my desires, and He’s in this with us as much more than a spectator.  Hard to think about the Lord loving Annelise more than we do, but He does!

- I’m still praying for her to be shockingly healthy, but I know struggle is part of this world, so if she is born but has health struggles, please pray for Kevin and me as we look for God’s wisdom above ours with medical decisions for this sweet kid.  I know my internal brain battles will be “did we do the right thing?  Should we have....” especially if we lose her.  I have already started praying now that I’ll be prepared to shake off that doubt quickly, Kevin too.  I’m not expecting to escape those thoughts entirely, but I’d like to not get stuck by them for long in the future.

While it’s so uncomfortable to sit in this time of unknown and feeling helpless and just broken-hearted that someone with the skills to save my baby’s life would look at her prognosis with mental deficits and medical challenges, with a shortened life span, and say “not worth it”.  To my face!  I can feel my skin growing thicker, a feeling I felt the first year of being a social worker too.  Not a comfortable feeling (part of the reason I was only a social worker for 365 days), but necessary when I’m going to have to step out of my harmony loving personality and as gently as I can, walk into conflict and challenge a powerful stranger’s assumptions about the value of the chance of time with my daughter as she is.  I am so grateful for the 8 years of working with kids and their families on the autism spectrum.  I have had the experience over and over of getting to know and forming a connection with a kid who has so much to offer the world in a different way, who brings irreplaceable value to their family and the people who spend enough time to get to know how to connect with them. My life is so much better because of “my” kids, the ones that are in my heart even when I don’t get to see them daily at work anymore.   I'm also better because of the parents I have met in the middle or beginning of their journey with a child who has needs that aren't typical of the general population.   Some of the best people!  If Annelise lives but never utters a word to me, there will be no doubt in my mind that she will still be a human with a God given need for connection to another human, and I will do whatever it takes to find where that connection is for her and meet her there, celebrating whatever little successes we can enjoy in the life that I hope for her to have with us.

I can get bogged down in the details of it all, but a good exercise for me is to go back to my original realization when we first heard about Trisomy 18 being a possibility.  God made her on purpose, and He knows what's going to happen.  This is the same God who I praise for all the things I love about life.  He's no different and is still worthy of that praise when things in this world are hurting my heart.

Stanford Study

Stanford Article

Impending Information

Four weeks have passed since our last ultrasound.  I’ve been able to see that Annelise is growing, because I sure am growing!  It’s still really hard to feel her moving around. My guess is that she may not have use of her legs due to the Spina Bifida, and the anterior placenta is still buffering her movements.  The lack of any real kicks has led to some anxiety filled days for me, as I would wait and focus on the lack of movement, which gave me lots of time to think about the worst case scenario of losing her in the womb.  Eventually, she always did make a movement thankfully!  So I know she’s here, and today marks the last day of our 2nd trimester!

After weeks and weeks of waiting for any new information, we’re expecting tomorrow to bring a lot to think about.  Kevin is taking the day off work (so thankful that he has a manager at work who supports him taking time off for these appointments) so we can go to 3 meetings tomorrow!
At 10:30, we’ll be at Children’s Hospital Orange County (CHOC) cardiology, getting a fetal echocardiogram.  We haven’t had one done yet, so it seemed like a great opportunity to get more info about her heart defect, as well as get introduced to cardiologists at CHOC.  They will give us recommendations based on what they find in the echocardiogram.
After lunch, at 1:30, we have an appointment to meet the palliative care coordinator, Annie, at Miller Children’s Hospital in Long Beach to get a tour of the NICU, meet some NICU staff, and possibly have a meeting with the cardiologist there, if he is available.  From my understanding so far, Annie’s job is to find out what our wishes are for the care of Annelise, and help communicate our wishes to the specialists.  Not all parents choose to request interventions for their babies with trisomy 18.  Some parents choose to spend as much time with their  baby as possible, and just keep them comfortable for as long as they can survive on their own. Kevin and I have decided to provide as many interventions as could possibly help Annelise, such as Spina Bifida surgeries, intubation if necessary (often necessary for babies with T18 due to floppy airways), g-tube to help her eat if needed... and whatever else comes up if we’re lucky enough to care for her on this side of the womb.  After being a part of a Facebook group for Trisomy parents, and seeing that some of their little ones make it through interventions to come home and have a place in their families, we can’t NOT try all that is available in 2019.  So since there is such a great difference in how families choose to address the issues that come from having T18, I like the idea of having Annie at Miller Children’s to help us make it known that our goal is to get Annelise healthy enough to come home..
We’ve been counseled by an incredible couple who has been through their own Trisomy 18 experience 3 years ago with their son, that we will have to be our own advocates and make it very known, and probably over and over, our desires to treat Annelise’s health issues.  We’d love prayer for wisdom about who we will plan to have on Annelise’s team of specialists.  I could also use some extra wisdom about how to let go of trying to get all the details squared away, since so much of the story will just need to unfold in real time, and decisions will need to be made as issues come up or don’t, but we won’t know until we get there...  I’ve been able to see over and over the dance I do with the Lord where I add things to my to-do list, research and plan, then inevitably freak out, and as I feel totally overwhelmed, give the pieces left of me over to God, and He puts the pieces back together by reminding me of just how big He is, and how big his plans are for me, and that He may be asking me to trust beyond what I think I’m capable of... but that He will always give me His strength and comfort when I don’t have any more of my own.  Some days I feel stronger than ever, and other days I’m just scraping by.  I heard a song that has a line that I love: “life is not a snapshot”, and that is so true of this season!  It helps during the times when I’m feeling anxious and overwhelmed to recognize that this isn’t the whole picture of my life or my relationship with God, or my mental health!  I’m going to have hard moments because this is a hard thing!!  I’m so grateful for my amazing husband.  My favorite interaction recently was when I was feeling particularly vulnerable and shared with Kevin “what if God knows I can’t handle seeing her uncomfortable or hurting in the hospital, so He takes her before she’s born because He knows it’s more than I can do?”  His response was just to throw out another what-if scenario.... “what if God’s plan is for her to live so that God can show us that He’s the one getting us through”.  Oh man, there’s that perspective shift again, thank you husband!🥰
At 3pm we’ll go to get a growth check ultrasound to see how Annelise is growing.  I can’t wait to see her!