Stresses and Struggles

This has been a hard week for me.  As we get closer to our next cardiologist appointment and meeting our (new) Maternal Fetal Medicine specialist, my emotions are pretty much all over the map.  There’s a lot of stress and a lot of emotional struggles at work that just make for a pretty overwhelming situation.

I’m struggling with dealing with all of the emotions involving Savannah this week.  I love my sweet girl, and I can’t wait to meet her.  Her heart problems don’t in any way change how much I love her or how very excited I am to meet her.  It does make me incredibly nervous, though, about what is going to happen once she arrives.  It’s a very tough pull of emotions….being so excited for her to get here and dreading all the unknowns that will happen once she’s born.  She’s so strong right now and I feel her moving often, and right now, I know she’s safe and happy and growing well.  After she’s born, I relinquish the ability I have to keep being her support system.  I become a bystander and can do nothing but pray for my baby girl and her health.  It’s frightening and one of the hardest things I’ve ever had to face.  I find myself telling the Lord quite often that He’s going to have to handle more of this because some days I feel like I’m falling apart.

I’m also feeling stress about selecting her medical care.  This is so far from my area of expertise.  I don’t understand everything that’s going on, I don’t know what questions to ask, and I just don’t know what I’m supposed to do for Savannah’s best interests.  I’m trying to do my very best in working with insurance, with our current doctors, and with other institutions to seek second opinions; but it seems that no matter what I do, there’s someone who speaks against it.  From posting on message boards and groups with other parents of heart babies, I’ve been told a million things.  I’ve had parents tell me that Riley will be fantastic and will be able to treat her just fine.  I’ve had others tell me they had a horrible experience with Riley and to seek out another place for treatment.  I’ve had people tell me I’m not doing the right things and give me laundry lists of things to ask for and do.  I’ve had people tell me not to trust our current doctors, or any doctors.  It’s overwhelming and upsetting.  There is no manual for this, no guidebook on how to get the very best for your child.  All I can do is pray for wisdom in a situation where I feel like I have none.

Our financial situation has also been weighing heavily on my heart.  As most of you know, I own my own business making personalized and metalwork jewelry.  My income pays part of our household bills.  When Savannah comes, I’ll be staying with her until she’s able to come home.   This means I’m not able to work or bring in any money for my “part” of our bills and it also means I’ll not be able to sell for the Christmas rush, which usually makes up about 40% of my businesses yearly income.  In addition to that, we’ll have the added expenses of travel, lodging, and food for me, as well as whatever is not covered by our insurance for Savannah’s medical care.  I am praying that the Lord will bless my business in the next few months so that I can store away enough money to pay for all those expenses and not be stressed and burdened by that situation while I need to be focusing on Savannah.  I’ve also started releasing a line of CHD (Congenital Heart Defect) awareness jewelry that is specifically designed to help with expenses related to Savannah’s care.  It’s difficult to struggle between making the money you need to care for your child and being there for your child through every bit of their medical journey.  It hurts my heart to think about all of it.

I feel like the only “right” thing I know how to do is fall on my knees and pray for Savannah.  I can’t handle this on my own, or even with all the earthly support in the world, and that is the only place I know to turn.  And sometimes, all I can do is cry and hope the Lord knows what’s on my heart.  I am trying.  I am doing the best I can given all the complex emotions that are swirling through me.  Despite all that, I feel so inadequate to be in this situation.

I still pray, multiple times daily, for Savannah’s heart to be whole and healed.  That, beyond anything else, is what I ask for and desire the most.  Here is part of a post I made on her facebook group last week:

We would appreciate everyone praying and claiming Savannah’s healing while we draw closer our next echo on the 12th.

Matthew 17:20 says:

”Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and IT WILL MOVE. Nothing will be impossible for you.”



Surely if we can move mountains by faith, moving a few vessels, fixing a few valves, and developing the rest of a heart chamber should be no problem! God is mighty!

I honestly don’t know what else to do but pray and tell those vessels, valves, and chambers to move and develop in Jesus’ Name.  Ryan and I would ask any and every member of the Body of Christ to join us in those prayers.  Savannah’s heart is no bigger than the end of your pointer finger (top knuckle to the end of your finger) right now, and when we can push the emotions aside, we know that God is much much bigger than Savannah’s sweet little heart.  Please pray, in ernest, for our echo and appointment on Thursday.  Pray for wonderful news, for healing, and for wisdom as we deal with all this.

For those interested in Savannah’s Facebook group:
https://www.facebook.com/groups/330765797059775/

For those interested in CHD Awareness jewelry:
https://www.etsy.com/shop/thirtyoneshekels?section_id=14176848

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God’s Power and Wisdom

This week, we’ve seen a great deal of support pouring out of our church family, extended family, and friends.  There are no adequate words to express how much all of the prayers and well wishes mean to us.  We are so incredibly thankful.

So frequently in this support, I’m being asked “Are you ok?” and “How are you handling this?”  If I’m being honest, no, I’m not ok, but I’m working on it.  And I am not handling this.  Very, very shortly after finding out something was not right with Savannah’s heart, I told the Lord that He was going to have to handle this.  I have no idea how to go through this.  There is no manual on how to cope in this type of situation, no guidelines for what you should and shouldn’t do or say or think.  So it’s not me that’s “handling” this, not at all.  The good Lord has to do it for me, because I am not capable.  Though I pray, countless times a day, for my sweet girl, this is no longer my fight.  It’s not Ryan’s fight.  It’s not even Savannah’s fight.  This is the Lord’s battle, and there’s no one else I’d rather have on our side.

The great thing about sending Christ in to battle for you is that He’s a whole army.  Pastor Chris talked in church this Sunday about the Church (the PEOPLE, not the building) being the Body of Christ.  We, as the Body, are called to be the hands and feet of Jesus.   We, as the Body, have the power and authority of Jesus at our fingertips.  Knowing that so many of the Body are praying for Savannah and her health gives me a great sense of comfort.  I am immensely thankful for each person that calls on the power of Christ to let Savannah’s heart be healed.

This verse was part of Sunday’s message:

“Even before He made the world, God loved us and chose us in Christ to be holy and without fault in his eyes.  God decided in advance to adopt us into His own family by bringing us to Himself through Jesus Christ. This is what He wanted to do, and it gave Him great pleasure.” Ephesians 1:4-5

Sweet Savannah is chosen in Christ, and she is perfect, without fault, in the eyes of the Lord, no matter her heart condition.  She is already held close to Jesus.  She is already on the Lord’s mind as He’s knitting her together, and He knows her already.  Why would I NOT turn her battle over to Jesus?  The ultimate authority and divine Healer knows far better than I do what is best for Savannah.  Though it’s not always easy, I’m trusting Him to make the best decisions for her.  While I pray, plead even, repeatedly for her heart to improve, for her to heal, I am trying to accept the fact that the Lord knows best.  He has a purpose and a plan for Savannah, and He knows that plan already.  He’ll put her together in the way He knows best, because He knows every single day of her life already.

For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
-Psalm 139:13-16

The other thing I’m trying to remember is to be whole-hearted in my faith through this.  I can’t be scared to ask for complete healing, just because I am afraid I’m not going to get it.  We often have not because we ask not, so I am still asking.  And I do hope and pray daily that complete and total healing is in Christ’s plan.  I’d ask that all of you pray for the same thing.  Pray for strength and coping for Ryan and me, but above all, lift Savannah for complete and total healing in Christ.  Nothing would thrill me more than for her to be born and for her cardiology team to say “This little girl’s heart is flawless.”

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Moving Forward

We’ve been working at processing all this news.  I’ve been swinging back and forth between “ok” and “everything but ok” a lot, but I seem to be getting through part of the  “processing” and working toward learning to deal with everything and figure out what exactly we need to do.  At the very least, I’m crying less frequently and less hysterically.  I’m told this is pretty typical for dealing with something like this, and I’m just trying to do the best I can.  I’ve been blessed to have my family here to “rescue” me through a lot of this and help keep me from being by myself too much.  I’ve had help with the house post-flooding, I’ve been taken shopping to get out and I’ve been allowed to just “lose it” when I need to lose it.  They’ve also helped keep me busy and focused on the positive.  I’ve also been subbing for a friend for several days this week, which has been a great help for keeping me busy.  Life with fifth graders is never dull!  It has been wonderful to have things to keep me from dwelling too much on things I can’t really do anything about right now.

Moving forward has so many meanings right now.  As far as Savannah’s condition goes, I’ve been doing research and talking on some message boards with other parents who have babies with heart conditions.  One thing I’ve found is that some babies have had improved diagnosis as they have more fetal echocardiograms.  This seems to be because the baby is still growing and developing and many times the heart continues to make improvements and changes.  One particular baby had many of the same conditions that Savannah has, and as the mother went for more echos during her pregnancy, the conditions improved as the baby’s heart grew.  This gives me some renewed hope that things can improve from where we are right now.  We return to Riley for another fetal echo on September 12.  Please pray, in earnest, that we get improved news about Savannah’s heart at the next echo.  Pray specifically that the holes in her heart (Atrial Septal Defect and Ventricular Septal Defect) begin to close themselves and that the two valves between the atriums and ventricles will both develop fully and separately.  Also pray that her smaller ventricle will “catch up” in size to the rest of her heart and be able to function normally. 

Also medically, I’m looking in to getting a second opinion about Savannah’s echos and ultrasounds.  I think we have a fantastic pediatric cardiologist and I have a great deal of faith in him, but I found out that Boston Children’s Hospital, which is the #1 Pediatric Cardiology facility in the country, will review a set of fetal echos and ultrasounds and offer up a second opinion.  Then they can work with our current cardiologist to decide on the best course of action.  I think that in the case of a rather complex set of heart defects, that “two heads are better than one.”  Also, there’s always the possibility that the cardiologist at Boston will catch something that the doctor  here missed, and vice versa.  The more we know, the more prepared we can be.

All that being said, nothing is certain for a final diagnosis until Savannah is born.  They can tell a lot in utero, but when it boils down to it, they can’t get a good, solid look at every part of her heart until she is born and they can echo her directly.  We know that this will happen shortly after she is born and that will help us create the “final plan” for exactly what course of treatment she will need.  I still pray daily (multiple times!) that when she is born, her heart will be fully functional.  The fact that is it on the wrong side of her chest and backwards is not something that can or will be corrected.  A heart can function just fine with those issues.  It is the structure of the inside of the heart and the blood vessels that matters, and how they move blood to and from the lungs and body.  She needs oxygenated blood to reach from the top of her head to the tips of her toes, so that is what I ask for.  I know we serve a God who is still in the business of miracles and healing, and that we often have not because we ask not…..so I’m asking!

For anyone that has missed it, we started a facebook group for Savannah’s Heart, too.  I’ll post there when I update the blog, or when we have a little update or picture to share between blog posts.  You can find the group on Facebook by searching Savannah’s Heart or going here: https://www.facebook.com/groups/330765797059775/
Please feel free to share the blog or facebook page with others.  The more people praying for Savannah’s miracle heart, the better!

Overall, I’m actually feeling pretty good.  Sweet Miss Savannah is an active baby….she moves a LOT and is always letting me know she’s in there.  She’s so strong!   The only thing I’ve found so far that seems to calm her down pretty quickly is Ryan talking to her.  She was moving and grooving the other night and as soon as she heard Daddy, she started laying still.  Of course, we were TRYING to get her to move for him, the little stinker.  She already seems to do things her own way.  Ryan says she’s going to be a little turkey when she gets here and I think I agree.

I’m also trying to anticipate the timeline for our needs after Savannah’s arrival and finish up a couple baby registries.  I have a shower in TWO WEEKS and all of these developments have put me behind in registering for anything.  I’m also altering the registry somewhat to try and anticipate our changing needs based on how Savannah’s health develops.  One example; I wasn’t going to register for a crib.  We have an old, used one that I was going to work with.  But we have been told that Savannah is probably going to come home with medical equipment and will possibly be facing multiple surgeries.  Since I’m extremely short, we’re going to need a sleeping situation that will allow me to pick her up and put her down by “scooping” and not picking her up under the arms.  This means a different crib is necessary.  Since drop side cribs are now illegal, I’ve found a crib that offers a “drop gate” that drops on a hinge 6-9 inches from the top of the crib.  This, coupled with the mattress at the highest level, should allow me to pick her up and put her down without hurting her or disconnecting any equipment on accident.  Not something we anticipated needing, but all the same, if it’s what we need to care for Savannah in the best way possible, we’ll make it work somehow!  It’s so hard to try to plan for everything we’ll need after she’s born, especially given the circumstances.  I’m doing my best, though, and I think for now, that’s all I can do!

 

 

 

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Consider it pure JOY

Savannah Joy Hensler.  It look Lori and I weeks and weeks to get a common list of names that we liked.  She liked some that I didn’t and vice versa.  Plus with Lori being a teacher, there were several good names that were just ruined.  It wasn’t until recently that we finally agreed on Savannah Joy.  We actually had another name that we were leaning towards, but it all changed when we learned of her heart condition.  While the name “Savannah” is simply of spanish origin meaning “from the open plain,” her middle name is what solidified this choice in our minds.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4 (NIV)

Honestly, I’ve never really thought that much about joy.  I mean it is the second fruit of the spirit after all, but what does it spiritually mean?  Joy?  The dictionary offers a few ideas: 1 the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires, 2 a state of happiness or felicity, 3 a source or cause of delight.  But if it’s all about “happiness” and “what one desires,” I think we’re really missing the mark.

While I’m happy that we’re expecting our little “bundle of joy,” I’m not exactly happy with this situation.  Frankly, this is awful.  I wouldn’t wish this on anyone!  If it’s about what I desire, I don’t desire this at all.  I want her so badly to just be fixed with no “defects” or problems.  But if I dwell on all the problems, the “what ifs” will eat me alive.  While it’s almost comforting to sit and waller in your own pity, it’s toxic.

I believe that joy supersedes a carnal happiness and is much more about a spiritual peace.  One definition I read said that joy was merely the happy state from knowing and serving God.  The result may be a kind of happy emotion, but the foundation is in the Lord.

Rejoice in the Lord always; again I will say, rejoice!  Let your gentle spirit be known to all men. The Lord is near.  Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7 (NIV)

It’s certainly not easy, but we’re working everyday to consider each trial pure joy.  Pure joy that we get by standing on the promises of God.  Pure joy that we’ll be reminded of each time we see her, hold her, and say her name, “Savannah Joy!”