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!

Annelise Faith in 3D!

Hello family and friends!❤️

The ultrasound appointment yesterday for Annelise didn’t bring to light any new issues, so for that, we’re very grateful!  She’s measuring small, an average of 3 weeks behind where other typical babies are at, growth wise.  Her head size is the smallest, 4 weeks behind as far as the expected size for 24 weeks gestational age.  This gives us a direction for prayer.  I’d love to see her growth catch up a little by the next appointment, scheduled for April 11th, at 3pm.  We’re also praying for her lungs as they develop blood vessels and air sacs.  The Spina Bifida is more visible now that she is growing.  My prayer is for that to just disappear... that seems the simplest solution to me!  But if not, then I’d love Annelise to be born with strong lungs and a heart that wouldn’t impede a surgery to repair the Spina Bifida issue.  She has a list of medical issues to assess/deal with after delivery, and a list of issues that make the actual delivery impossible to predict.  Kevin and I have been discussing our choice of doctors, and how to get access to surgeons before she’s born.  Our doctor’s meeting with the Long Beach Memorial team was postponed until April, but we are on the list.  Once he presents Annelise’s case, he will get recommendations and feedback from surgeons who may be called upon to work on Annelise at some point.  

This situation makes me feel so out of control.  We’re going to look into finding out if we can also present a case for Annelise at CHOC, a little farther away, to see what their surgeons recommend as a second opinion.  We’ve already experienced that the medical field in general (not everyone, thankfully!!) has what can only be described as different opinions as far as the best way to treat a child with a Trisomy 18 diagnosis.  We are looking for surgeons and specialists who have the opinion that Annelise’s life matters because she has a life, regardless of the physical and cognitive limitations that she would also live with.  The Lord helped take some control issues from my heart during the ultrasound.  Annelise was so busy moving around that the regular ultrasound images weren’t super clear.  I told our ultrasound tech (the one we had the first few times, a treasure of a human, thank you Lord!) that we had people praying for us and I like to add an ultrasound picture to each blog.  She couldn’t get a really clear shot, so she surprised us by switching to a 3D image!  Seeing that babe’s little nose, and tiny ears, with her hand on her forehead, which is how Kevin often sleeps!☺️ was so incredible.  What a powerful visual that was that just took all my “am I enough for this?” feelings and wanting to know exactly what to expect... in that moment and every time I look at that picture, I just love that baby girl so much.  I’m reminded that she’s a gift just for being her... medical issues and all, for however long God has designed for her to be with us.  And once again, my anxieties are emptied and again I’m filled up with knowing that the Lord sees me as His precious child too, regardless of all the mess and baggage that I carry with me too.  We can do this because we aren’t doing it alone.

In addition to the ways my faith in God’s sovereignty has grown this past month, I continue to be reminded that we aren’t alone in this by the beautiful people in our community, and even further, by the people who make up our people’s communities too!   I’ve been loaned helpful books that people found while going through their own season of loss to help us navigate the intensity of this season.  Sweet handmade gifts, and words of Godly encouragement have come our way from people we haven’t even met, but that do life with our family and are holding us and our sweet baby up in prayer.  Talk about seeing the Lord work!  The community of parents of babies with Trisomy 18 has also been  amazing.  I’ve learned so much from the rare trisomy parents page that I joined on facebook.  Through that page we got connected to a family nearby who has a 3-year-old living with Trisomy 18. We’re planning to meet them next weekend!

I still have the whole range of emotions on kind of a rotating wheel of feelings.  This week, in an attempt to become more familiar with the hospital we’re planning to deliver at... I signed us up for a metenity orientation meeting.  It ended up being over an hour of information for typical birth experiences... I’ve worked hard to consciously not compare my pregnancy to others’, and it has been thankfully easy to go to my friends’ baby showers and be overjoyed for the healthy miracles that the Lord has blessed them with.  It was not the best environment to sit and listen to all of the experiences that we won’t have at delivery, because our blessing includes medical hurdles and we don’t know what the circumstances will be when we get to meet our daughter.  We made it through though, and now I know to contact NICU people to get a more realistic picture of what might be in store for us.  The negative feelings are as valid and real as the optimistic and joyful ones.  I’m getting more used to managing the ups and downs as they come.  I appreciate the friends and family I have that encourage me to have all of my feelings, and don’t rush me through, and who are going through this with us. Thank you!❤️

2/21 Ultrasound update

Today we met with a different ultrasound technician, as well as a new doctor to go over the findings of the ultrasound.  At first, this ultrasound tech didn’t say much, and made me miss the really awesome tech we’d seen the last two times who explained what she was looking at, but after some time, she warmed up and was more talkative and wonderful too.  Basically, I can pick out the heart, the limbs, spine, and the brain... but anything else I need to have explained to me what we’re looking at. It’s just a bunch of gray and white fuzz to me.  I like having multiple sets of eyes looking at ultrasound images because it’s so vague and fuzzy in there, and depending on how wiggly Annelise is at the time, they’ve had slightly different opinions about what they see, so it’s interesting to hear them discuss.  The things they all agree on though, are that she still does have a problem in the wall between the two bottom chambers of her heart, which is relatively common they say, and also some Spina Bifida, although at this point, they don’t think it’s very major, although it would still be an issue they would need to fix right away if they can after she is born.  I almost went back and deleted the “if they can” from the last sentence.  I have different perspectives on the same statement.  I want to remove it because it seems pessimistic, and why invite negativity into my hopes and dreams for this loved and important baby of ours?  On the other hand, I want to be realistic, and we’re up against a lot of health challenges here... the major relationship of her heart and lungs is expected to be  her biggest hurdle, and there’s no way to know how she will do until she is born and starts to breathe. I’m reminded too that I’ll be considered lucky to meet her alive after she’s born.  If she does make it to birth and beyond, I want to be realistic enough to know and feel in that moment how lucky I will be to have that time with our girl!  I felt so lucky to get to watch her move around in the ultrasound today for more than a half hour.  She clasped her little hands together and was super wiggly.  I’m told because of the placement of my placenta, her kicks are getting muffled by the placenta, so I probably shouldn’t expect to feel her kick for a few more weeks.  I’m thankful to have a good reason for not feeling her... I was beginning to have anxiety about not feeling her movements, and was so excited to see her little heart beating today!  No new issues were found today, thankfully.  She’s measuring at 2 weeks behind in growth.  Babies with trisomy 18 are often very small.  The goal is to keep her happy in the womb as long as possible so she can grow as much as possible, to have the best chance outside the womb as possible.

The next ultrasound is scheduled for 3/14.  They’ll check how she’s growing again... and I also get to do normal pregnancy stuff too!  Like the glucose test😝!  I have not heard great things about that experience.  I wonder, if it’s so gross, why nobody has invented an Oreo flavor to make people more excited to participate!

I’ve gotten a lot out of writing this blog.  Sometimes without even getting the chance to write it down, thinking about how I would describe a thought or feeling in the blog has been really therapeutic as far as helping me process my thoughts.  One thing I can’t NOT share though is what happened yesterday.  I’ve shared about how this journey has brought a peace during the scary times that I know is because I asked the Lord to share His peace, and that it has been so amazing to know that people I don’t even know are praying for us through this season!  It has been amazing the way that God has provided people who reach out with a hello or encouragement at seemingly just the right time, or tangible arms to hug, or just the freedom to bring whatever feelings I have at the moment and be heard by friends who know they can’t and don’t need to fix it, they just feel with me.  Well yesterday, I was contacted by friends who have friends who connected me to a young lady who’s also pregnant, 20 weeks along, with a baby with Trisomy 18!  I felt an immediate connection to her situation, and wasn’t sure how, but if I could be, I knew I wanted to know this girl more and share the good parts and understand the scary parts in a way that is only possible for me to understand now, because I’m actually at the same point in pregnancy as she.  We ended up talking on the phone, shared our stories, and I hung up feeling so amazed at seeing the Lord orchestrate a meeting between two people who didn’t have much else in common other than the same people were praying for both of us.  I had been having anxiety about the upcoming ultrasound, but being so near to God working, reminded me that He’s right there, and He works for our good... which reminded me to recognize that He does that even when I don’t see it as obviously laid out for me as a telephone appointment was yesterday.  If you’re praying with me, please also lift up Hannah, that she experience the peace that goes beyond understanding.  It’s amazing to know that God is big enough for all of our hurts all the time.  My aha moment this week was the realization that even though God already knows what’s going to happen, He wants to hear our prayers, hopes, and dreams.  He actually wants us to tell Him, He doesn’t just tolerate us asking for things. Hannah named her sweet baby girl, Athena.

Onward to the next 3 week stretch of growing!