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.

 

 

The Birth of our Miracle

I was spending some time editing and updating the site today.  I was reading over the diagnosis page and was glad to remove the following text:

One of the first hurdles will be directly after birth.  The switch from her mother’s body doing all the work to Savannah’s own body doing the work will be the first test of survival.  Because of this, delivery will be taking place at University of Cincinnati Hospital with Savannah’s cardiology team from Cincinnati Children’s Hospital available the minute she’s born.

Immediately after birth, the doctors can give her medications to help keep her blood pumping and essentially keep her heart working the way it is now in the womb.  They will also put ports in her belly button in place of her umbilical cord to deliver antibiotics and other needed medications.  Once she is stabilized in the NICU at University of Cincinnati Hospital, she’ll be moved by ambulance just up the street to Cincinnati Children’s Hospital.  This will happen just hours after delivery.  There she’ll be placed in their Cardiac Intensive Care Unit.  This will help them monitor her heart, evaluate the need for stints or shunts in her heart, and watch her oxygen levels and lung function.

As I look back to just last month, that was spot on with how it happened.  There were over 20 people in that delivery room.  Just after Savannah was born, there were close to 10 people (doctors, medical students, etc.) standing around Savannah.  Savannah was only here a few minutes before we made the trip down the hall to NICU.  I remember talking with Dr. Van Hook, Maternal Fetal Medicine Doctor, about how great the process went on our way to the NICU.

It was only another 20 or 30 minutes that the transport team from Cincinnati Children’s showed up in the NICU.  It was something else seeing these folks walk into the room.  They were wearing jump suits like race car drivers would wear.  Then the transporter they put her in was quite intimidating.

All in all, it was amazing to see our little miracle quite literally begin her life.  It was two weeks to the day that we were able to take Savannah home from Cincinnati Children’s Hospital.  We are still utilizing a home health nurse, weekly checks with her cardiologist, and a daily monitoring regiment.  Even so, I’d much rather be home together as a family!

We’re Home!!!

After one week in Cardiac ICU and another week on the cardiac floor, on Wednesday, December 4th, we brought Savannah home to Kokomo.  God truly has blessed our little girl.  Delivery went smoothly for Savannah, and there were minimal complications while in the hospital.

Our thought is that Home is the best place to heal and grow, and thankfully, our doctors agree.  Now that we’re home, Savannah is undergoing a rigorous in-home monitoring program. We have a daily routine that we record and send to Cincinnati Children’s Hospital on a regular basis.  This includes weight, oxygen saturation levels, feeding schedule and amount, and more.  We then have twice weekly in-home nursing care, along with weekly visits to the pediatric cardiologist and pediatrician.  Sissy will also be seen by an infectious disease immunologist soon to help us get a better handle on Savannah’s needs.

The fact that we are home certainly makes some things easier, but it’s still a lot to manage.  We’re looking at a trip to Riley Children’s Hospital at least once a week to see her cardiologist, and that will continue until her heart surgery.

In all honesty, we’re not entirely sure when or what surgery she is going to have.  We’ve talked with doctors in Indianapolis, surgeons in Cincinnati, and a surgeon at Boston Children’s Hospital. We’ve got mixed messages from all three, as each have different experience levels and surgical resources.

Based on what we’ve heard, we are leaning toward traveling to Boston, Massachusetts for Savannah to have her heart reconstruction surgery at Boston Children’s Hospital.  Dr. Pedro del Nido has already agreed to take Savannah on as a patient.  He is a pioneer of new pediatric cardiology surgical techniques. You can watch a video about him below:

 

Please continue to pray for Miss Savannah and her family.  We have a very long road ahead.  Your emotional, financial, and prayer support are so greatly appreciated.  Savannah’s little body is calling the shots at this point.  We wait, and she will tell us when surgery is needed.  We are back to wait, see, and prayer!

First Morning

I want to start with a few words of thanks!  We certainly appreciate all your thoughts and prayers.

Miss Savannah is now here.  Born Wednesday, November 20, 2013 at 2:07 PM weighing 4 lbs, 14 ounces, measuring 17.7 inches long.  Both Mom and Baby are doing quite well.

The biggest initial hurdle was certainly jumped right over with little cause for alarm.  That hurdle was birth and the transition to Savannah breathing on her own.  Sissy is still doing great.  All that stated, that was just the first hurdle.  Already this morning, I’ve had a few more of our biggest concerns confirmed.  The first is that Savannah most likely doesn’t have a spleen.  They weren’t able to find it when they looked with ultrasound last night.

Also, the cardiology fellow just informed me that we’re going to have to schedule her first surgery.  This will be to place a band on her pulmonary artery.  This band will limit the blood flow to her lungs and prevent her from getting wet lung.  While they don’t have to open her heart for this procedure, they will still have to open her chest.  For a little 5 pound baby without a spleen, this is another big hurdle!  Frankly her body was designed to be born.  Her body wasn’t designed for this intervention.  Her first surgery will likely happen within the next few days.  We will certainly share all the details.

Please continue to pray for Baby Savannah along with Lori and me.  This journey has just begun.