Brutal Honesty: The Tough Stuff

Ryan and I have tried to be very transparent through this journey with Savannah.  While we try to be optimistic and keep a positive outlook, this is not easy.  So with that all in mind, I’m going to “lay it out there” and try to give some perspective on what it feels like to be where we are.

I was completely unable to enjoy the last part of my pregnancy.  From the minute they told us there was something wrong with her heart, my ability to be excited and happily anticipate her arrival was gone.  I lived in dread of every ultrasound (which ended up being weekly) and every non-stress test (also weekly).  Even worse were the fetal echos, where they looked at Savannah’s tiny heart.  I was terrified, constantly, that she would no longer be alive, or that they would find yet another problem in her tiny body.  It was gut wrenching every time the ultrasound probe was touched to my belly until I saw her tiny heart fluttering.  Even then, it was still an extremely anxious time until the doctors told me what they were seeing.  The worst day was when we went for our fetal MRI.  The list of defects the doctors presented us was nauseating.  And when we asked the “big” question – Will she be alright?  Will she live? – the doctors could not give us an answer.  My heart broke at that point, and I am not sure it will ever be whole again.

I had trouble getting her nursery ready and enjoying her baby showers.  I cried painting the mural on her wall and I can’t count the number of times I knelt by her crib and laid hands on it, begging the Lord to heal my sweet little girl.  I feared that she would never live to see her nursery.  I was terrified that she would never wear the tiny clothes I organized.  We were unsure if she would ever come home at all.  How do you enjoy preparing a place that may ultimately become a place that just causes heartache?

After Savannah was born, I lived in the constant state of chaos that comes with being in the Cardiac ICU.  Every time a monitor alarmed, every time a concerned look crossed a nurse’s face, my heart leapt in to my throat.  That means it stayed there the majority of the time.  I lived in fear of rounds with the doctors – three times a day – because they used words like “collapsed lungs” and “heart failure” and “feeding tubes” and “central lines.”  The road to coming home was tough and anxiety-filled.  I was away from Ryan most of the time, at the hospital with Savannah, sleeping in her room and often too anxious to even go eat.

Savannah is home now, and by God’s grace, doing relatively well.  She is at home with us, which is a tremendous blessing.  But some people seem to think that because she is home that she is “better” and everything will be fine.  That couldn’t be further from the truth and I live daily in the swirling vortex of what is to come.

For now, Savannah is at home.  We are thankful, so very thankful, for some time at home with her.  But it is nothing like I anticipated.  Instead of enjoying bonding time with her while feeding, it’s a time of anxiety.  We are not allowed to breastfeed because the doctors are obsessed with every milliliter that goes in to her body.  Because of this, I pump milk for her.  I struggle with my supply but I have to keep going.  Savannah’s immune issues mean she needs every single one of my antibodies and she can only get those through breastmilk.  I do the best I can and deal with the pain and inconvenience for her benefit.  Sometimes I pump for 15 minutes for only 3 milliliters total of milk.  A puddle the size of a quarter.  Savannah is worth it, but it’s still tough.

Beyond the pumping, I can’t just mix a bottle and feed her.  Every bottle has to be measured to the milliliter.  I have to record every drop that she takes in, if it was fortified breastmilk or high calorie formula, and if she spit any of it up.  Instead of enjoying the time where I get to hold her and feed her, sometimes I’m in tears, pleading with her to eat enough to gain weight so they won’t force us inpatient again or put in a feeding tube.  I hate it.  I hate not being able to enjoy my daughter for fear of what she’ll go through if I don’t get her to eat enough.

I can’t think of anything more precious than holding Savannah.  I love to snuggle with her and hold her.  But even this comes with anxiety.  What if I have some germ I don’t know about and she gets sick?  What if it’s my fault?  What if she spikes a fever and we end up in the hospital again?  We have installed hand sanitizer dispensers (yes, like you see at the hospital) in our house.  If we leave the house, as soon as we walk in, we strip off the clothes that are now “contaminated” and wash them.  Then we shower immediately.  If we take Savannah out of the house for a doctors appointment, she goes through the same routine – as soon as we get home, clothes are off, she is bathed, and ever single one of her things is washed and sanitized.  The week that follows an “outing” is anxiety ridden as well.  Did she pick something up?  Is she warm because she’s crying or because she has a fever?  Will we end up in the emergency room over all this?

This journey is also lonely.  I can’t go to dinner with my friends.  I can’t go to the store for milk.  Many friends have vanished as I’m no longer “present” and therefore not on their mind.  It’s lonely for other reasons, as well.  It’s lonely because very few people have been where we are.  Very few people are told that, by the numbers, your daughter will die.  It breaks my heart in a million pieces to look at my precious daughter and realize we may not get nearly enough time with her.  I want to look at her and envision her first steps and her first day of school and her high school graduation and her on her Daddy’s arm at her wedding.  I look at her instead and cry because we may never get those days.

I feel like I’ve been so cheated from being a mommy.  I can’t fully enjoy my sweet daughter.  I want to look at her and see hope and promise.  I try so hard to see those things, but I know what she has to face and it terrifies me.  I have never been so scared in my life.  Most moms can smile down at their sleeping baby and how peaceful they look.  I look down and my eyes well with tears because I’m afraid that she might look like this at her funeral.  Eyes closed, peaceful face, so sweet.  She looks so perfect.  And then I beg God for that day not to come.

I dread the future.  I dread everything Savannah will have to face.  I live in constant fear of losing her, of having to watch while she passes from Earth to Heaven.  It’s agonizing. I can’t even count the number of times I’ve been on my knees, praying for her to get her miracle, for the Lord to reach down and touch her and heal her.  Never have I prayed for something with such earnest.  I have never cried so much in my life as I have in the 5 months since we found out about Savannah’s heart.  My heart is broken and I don’t know if I will ever feel like it is whole again.  Even if Savannah lives and thrives, I don’t think I will ever be able to enjoy being pregnant again.  I’m not even sure I could face it at all.  I will live in dread.  I am not strong enough to face this situation again.  I’m not even sure I am strong enough to do it this time around.

I want to look at my daughter with the same promise that most other parents get to experience.  I struggle to not get angry because I don’t get that privilege.  I also struggle not to snap at parents who constantly complain because their toddler is grumpy or their baby has a cold and was up a lot last night.  I know to them, this is their reality and it is bad to them….but I want to scream “Don’t you know how lucky you are to see her 2nd birthday??  Can’t you see that you’re blessed because you can fight a cold at home and not in the hospital?”  I long for those things that I will never have.  I long for a nursery free of medical equipment and medication.  I wish for a week without a home health nurse, a day without logging every single milliliter of milk and formula, for a month without dreading an echo or other heart procedure.  And only God can grant that wish.

I hate this journey.  I hate looking at my sweet little girl and knowing that, barring a miracle healing from God, I will have to hand her to a surgeon.  And he will cut her chest open and break her bones and do his best to give her a better heart.  Probably more than once.  I don’t know that I will ever have the strength to face that situation.  I can’t fathom doing that.  I don’t want her to go through all that pain, all those procedures.  I can’t handle it.  Just thinking about it now throws me in to a near panic attack.  I can’t shake the ever-present pit in my stomach.

Throughout all this, all I can do is cling to God.  I have never prayed so much in my life.  I have never needed to be held in the arms of Jesus as much as I have in the last 5 months.  I pray, plead, and beg for Him to heal Savannah and I struggle with my frustration when He doesn’t do it.  I don’t get it….”Ask and you shall receive”  “He will gives you the desires of your heart” – I’m asking, and I sure desire it…where’s the miracle for Savannah?  Why isn’t she worthy of a miracle?  Why hasn’t the Lord healed her?  And what do I have to do for her to get her healing?

But there’s nothing to do but pray.  There’s nothing to do but cling to hope and faith.  My sweet Savannah Joy needs the Lord’s healing touch and His strength through all this.  And I do, too, because I am not capable of handling this.  I can’t do it.  I have never experienced this much emotional pain and I have never been this scared.  I am emotionally exhausted, I am beyond physically tired, and my soul is weary.  The Lord is going to have to carry me, because I can no longer stand on my own.




  1. Lauren says:

    Thank you so much for sharing your raw emotions so eloquently. I hope, by writing these words, you have found an ounce of the weight you carry relieved. May you continue this journey with as much faith and empowerment as you have shown to do already.
    These words are written by a mother who undoubtedly loves her child and does everything in her power to provide… you are an amazing mother, a true believer and follower, and an inspiration. I pray for your courage and self-sacrafice to continue. I pray your mind, body, and spirit find rest and peace and that your sweet Savannah does indeed get to hold her daddy’s arm as she walks before loved ones in what will certainly be the wedding of her dreams.
    God bless you and your family and the journey you are on. Keep fighting. Keep praying. Keep believing.

  2. Laura says:

    Sweet Lori, my heart breaks for YOU. I know what worries and “agonies” I have faced as the mother of healthy children so I cannot even begin to imagine the emotions and heartache you have been experiencing. I am thankful that you have been able to cling to Jesus and allow him to carry you through this journey. I am thankful that he is faithful and I pray daily for your emotional, mental and physical strength to be of supernatural proportions because I know that is what I would need and I suspect it is what you and Ryan need to get through this. Know that you are not forgotten and that you are loved, thought of and prayed for daily.

  3. Neysa says:

    A friend of yours is in a mommy group with me and asked if I would read this and offer support. I will certainly try! I have a 3yr old heart baby and we’ve had quite the bumpy road. Most of what you’ve written I’ve either blogged about or could have written myself. You are so not alone.

    I had to pump as well. I felt like that breast milk was the only way to keep Mason alive and pumped through exhaustion, hospital stays, and pain. It was such a dark time in my life but it was very worth it.

    We also did complete isolation for long periods of time. I remember a friend on facebook posting a boohoo status about how her daughter was going to have to miss church because of a fever. I wanted to scream. Sooooooo sorry your healthy child had to miss ONE thing. I know it wasn’t fair to be angry at everyone, but I was. I was irritated at pregnant women who were excited about finding out gender at their 20wk u/s. Um, how about find out about the baby’s heart?

    My son still isn’t repaired and we will be facing a 3rd open heart surgery. You are so correct that having your child home and “looking healthy” causes people to minimize the horror that exists in their little chests. “Wow, he looks great” is what I always hear. I truly appreciate it, but I am really a positive person, but I also want people to understand that it *isn’t* all great.

    I’m not quite in the trenches anymore and our life does resemble a bit of normalcy, finally. However, those days are fresh in my mind so I am always open to talk!! I’ve blogged since Mason’s prenatal diagnosis so I’ll link you to it <3

  4. dbraks says:

    Thanks for sharing with us your raw emotions. We have stood beside and are walking with our daughter as she was told the words no parent should ever hear. She dealt with frequent visits and ultrasounds along with many specialists. We cried our eyes out and begged and pleaded with God. She birthed a beautiful little boy who lived 1 hour and 30 minutes. A big chunk of my heart went with that baby boy and I pray daily to be able to help her face another day without him. My prayers continue to be with all of you.

  5. Lesley says:

    Lori I’ve seen you struggle before and I know that you ARE strong enough. That strength amazes me every day and I’m sure I’m not alone when I say it makes me love you that much more.

    The trip to Holland bit is something my mom kept very close to her heart, being the mother of two handicapped boys (and dear Lord he gave her me on top of that!?). The second one I love a lot too. You’ve probably seen them before and no, they don’t make things better. But you are Savannah’s mommy for a reason. You are the one she needs and even in your struggles she loves you and she sees you as perfect. I can relate on some level… I loved being pregnant, and when Arden came so early I felt robbed. I am enjoying my second pregnancy, but it’s not the same. I live in fear that it’ll all happen again (and to some degree, it probably will) and that I may not be as lucky, even though I’ve been assured that things will be better this time, I’m being monitored, etc. I know the desire to slap women who are perfectly plump in their third trimester yet complaining about whether or not they got the perfect crib or the right carrier or the ideal stroller, not realizing how unbelievably lucky they are to even be pregnant. I love you sweetie and have you always in my thoughts and prayers.

  6. Susie G says:

    Lori, you have always been special. I know that even from when you were little.
    I know Savannah is definitely worthy of a miracle, and so are you and Ryan. I sure don’t understand these kind of things at all. And I have had things happen the last few years where I too have questioned God. Different circumstances, but anger bc I didn’t feel God did what I thought He would. Where was the protection I thought was promised in scripture? And I too have read posts and thought ” Why not for us? Or oh really? God didn’t do that for us ?
    I do know anxiety is no fun at all. I can’t tell you exactly how to let some of it go,but
    I know it will eat you alive. I am so sorry you are go by thru all this. And I sure have no idea why.
    I do know He has you in His hands, I will pray for all of you and I have nit forgotten you, and I know that just bc she is home does not mean all is well. My mom asks about you guys often and prays for her too.

  7. Carolyn Woods says:

    Dear Lori,
    Praying for you and crying for you. So sorry that you have to face all of this. Please know that your God is big enough to handle all your fears, your doubts and your whys. It is ok to ask why. He understands because He watched His son be born knowing all along that He would die. He loves you and He understands. Just keep pouring out your feelings to Him.
    Love you, Mrs. Carolyn

  8. Terri Huggins says:

    Lori – What a journey! I am so sorry to hear of your struggles, but rejoice in how you have turned it over to our heavenly father. I can’t imagine your vortex of emotions. Just before Christmas one of my colleagues delivered a baby boy and they are now in the NICU at Riley. Wiley has a hole in his heart and some additional heart problems that I cannot recall. Unlike you they were unaware of problems prior to deliver. I am sure that you have talked with other parents during your time there but I know that this family would welcome your time, experience and advise as well. Susie Gamblin knows how to reach me if you feel led to share with them and lean on each other. If not, I certainly understand….as you said in your blog…I’m just laying it out there :-). I will continue to lift you, your husband and little Savannah up In prayer.

  9. Sammy says:

    Hi Lori,
    We have never met, but I was browsing heart jewelry on etsy and I stumbled onto your store page. It is so hard to read all your going through. It is like a snapshot of our lives 4 1/2 years ago. My son was born with half a heart (and flipflopped, not like Savannah’s….the right ventricle was on the left and the left ventricle on the right) and he has had 3 open heart surgeries. I know what its like to be terrified to bring a baby home, have medical professionals tell you that you will outlive your own child, squeeze every drop of breastmilk from my breasts to no avail, medicating, tube-feeding, isolating and caring for our very fragile child. I had people tell me that God would change the ultrasounds and his heart would be normal…..obviously, that didn’t happen. So for no other reason than not having a choice, we walked, no…..crawled through the Valley of the Shadow of Death. Which is where you are right now and my heart hurts for you. Unless you have been there, no one understands what it is like. I am so sorry Lori. I know that no words can help. I didn’t have anyone to talk to while my son was an infant and very fragile and I was so isolated, so if you need to talk, or vent, please email me. I will constantly keep all of you in my prayers! Here is our website if you want to come take a look….

    you have to become a member, but that is only so that we can be encouraged by each visit=)

    Sammy Finnesgard

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