She was Worth It All

I've shared with everyone the emotional day that we found out that Harper was sick, the day that will forever be engrained in my heart and my soul because it was the day that Harper was given a very poor prognosis. At just 30 weeks, we were forced to soak in so much information regarding our little girl; news that we were not expecting by any means. Several times that first night we heard the phrase "Neonatal Palliative Care" and working in the health industry I knew exactly what this meant. You didn't have to give me a statistic on my daughter's prognosis, I didn't need a "%" because hearing those words to me only meant one thing, these doctors don't expect my little one to live. To say my heart was crushed is by far an understatement. I honestly don't think there are words in this world to describe the feeling parents endure when they find out their growing child is most likely not going to make it.

I was admitted to the hospital that night, and for the first night Harper and I hung out with a monitor for 24 hours to make sure her heart rate was doing well and that she did not appear in distress. My blood pressure was monitored and I was immediately given my first dose of steroids to help with Harper's lung development. That night we met with the neonatologist doctor who also specialized in their "palliative care" department.

At 1 am, we sat with this doctor discussing what we should expect with our diagnosis of Non Immune Hydrops.

She started off by explaining the basics: "Here's what I can tell you to expect with a "typical" hydrops case. Hydrops is defined as unexpected fluid in 2 or more abnormal spaces within your child. Over 50% of these cases don't have a known cause of why the fluid is there, which makes it difficult for us to treat at times.  Most hydrops babies come out looking like the Michelin Man due to the amount of fluid formulating in them. Your doctor says Harper's fluid looks to be primarily around the lungs, heart and under her skin.  Our main goal will be to insert chest tubes as fast as possible and see how much fluid we can get off of her while attempting to circulate oxygen throughout her lungs and body. One fear is that sometimes you drain the fluid and it comes back. We won't be sure what we are dealing with fully until she is born, and  I have to tell you that to me a successful hydrops case is being able to stabilize your child long enough to get her out of the delivery room and into the NICU and even if she makes it to the NICU she will have a very long and scary road ahead of her. This will not be easy for you guys or for her. You will need to think hard about the measures you will want to take when she is born."

I remember listening, just listening to one devastating word after another: chest tubes, NICU, palliative care, small chances, swollen, excess fluid, no known cause. My mind was still just trying to sort through the overload of information. The phrase,  "How did this happen?" was circling through my mind and was honestly all that I could focus on at this time. When the doctor left I looked at Adam and I just cried. I had to let it all out, I had to let it all go because I needed to be able to fight. I needed to be able to wipe the tears away and brave this cruel world and what it might have to offer. I looked at Adam after a few minutes and told him that I would try not to let the "unknown" get to be me because I knew the best way to keep Harper happy and healthy inside of me was for me to remain as healthy, happy and calm as possible; even when I felt the darkest I've ever felt in my life.

This darkness was so new to me. Harper had looked so healthy and happy, waving to the US at 20 weeks without complications... until now. This darkness rapidly appeared, in full force, just a few hours before when I heard the words uttered, "I'm sorry this is a very poor prognosis and it's likely your baby won't make it".  Such cruel words, but I also remember thinking at that moment though that I refused to give up. I refused to lose hope, I was going to find the light; there had to be some small chance that this could all be wrong. I refused to live in the darkness while I spent the next few weeks in the hospital. Harper and I were going to fight, and we were going to do anything it took to giver her a chance at life even if it meant just a few more weeks spent happily inside her Mommy. I would be lying though if I didn't tell you that at the same time this was all happening, I felt like such a failure. I was suppose to be the one protecting our daughter, I was the one carrying her and responsible for her, what had I done? How had I messed up? How did this happen?

A few weeks ago she was healthy, she was growing. A few weeks ago we were listening to her heart rate, we were counting down the weeks left to go, we were preparing Levi for the new addition and all it took was a few minutes of an ultrasound to change that direction entirely. Now all of a sudden we were talking about "palliative measures" and "she may just need comfort more than care." Devastation. Complete and utter devastation. Our entire world had changed in a matter of seconds and after soaking it all in, we knew exactly where we stood: In Love with our growing family and at the Mercy of the Lord.

The next few days were spent drawing blood and sending my labs off for test, after test, after test in order to try to find a reason for why our daughter developed this condition. In over half of Non- Immune Hydrops cases a reason is never found. Hydrops can be caused by so many variants: Parvo Virus, Genetic Abnormalities, Lymphatic Malformation and so on. After several tests, we fell into the half that would ride out this journey having no idea why Harper was filling with fluid. The specialists had "assumptions" of what they thought might have caused it, but those were exactly it, "assumptions" because nothing was coming out clear. Our little girl was fighting for her life inside of me and we had no idea the cause. (The likelihood of developing non-immune hydrops is said to be less than 1%).

The specialist also came out every day for the remainder of that week to perform an US to check on our little girls development. When he came out the following day after Harper's diagnosis he told us he felt "cautiously  optimistic" over what he found. I can't even tell you what these words did to my heart and my soul. I knew we still had a long road ahead of us, but there was indeed Hope.  He did not find fluid around her heart as he had suspected the night before, he found her breathing within me, which he had not found the previous night as well and the fluid seemed to not be as "terrible" as he had thought the night before. Those findings were all this Momma needed to keep it together. Those findings were the answers to my prayers while I planned to ride this pregnancy out. The plan was to let Harper develop as much as we possibly could inside of me. She was stable and happy and neither her nor I were showing extreme signs of distress, so the goal was to try to reach 37 weeks if possible in hopes that her lungs were developing under the pressure of all the fluid surrounding them,  and there unfortunately, was a lot of fluid surrounding them. 

The days went by: Adam and Levi came to visit me every single night, our parents took turns coming down to help assist with Levi (since it was Adam's busy season at work), the specialist began with three visits a week to scan Harper and since the fluid was not changing (thankfully not getting worse) she was bumped down to twice weekly scans. She moved day in and day out. She was feisty, she was sassy, she was most nurses favorite little girl and yet at the same time I was reminded by some that she was the most sick of all the little babies on the floor at that time.

Three times a day for every day that I was in the hospital they would monitor Harper's heart rate to make sure she was not in distress. Boy, did she dislike this time of the day. She would kick, squirm, push and hide to get away from the heart rate monitor. There were times I was hooked up to that machine for 3+ hours for one simple reading because she refused to let them find her. Momma's back dreaded the days she would not cooperate because lying still and being the size of "pregnant with twins|" (how my specialist defined the amount of fluid I was carrying) was most definitely not my idea of fun and my joints agreed. Nevertheless, she was worth every painful joint spent hooked up to that monitor. I cherished every movement I felt because I wasn't sure what was waiting for us on the other side of this world.

About a week in, the scans showed that I was retaining a massive amount of fluid myself. I specifically remember the specialist asking "Do you have trouble breathing? Are you tired all the time?" I laughed and told him "I'm pregnant and have an 18 month old, isn't it normal to be tired?" He laughed back and agreed. Nevertheless, it was recommended that we do an amniocentesis so that we could test for any genetic abnormalities that may have caused this disorder, we could double check the disease panel and they could drain fluid off of me. I was hesitant and so scared. What if this caused me to go into labor? Harper just needs to more time. After many prayers we decided to go for it and everything went well. Harper found the shiny needle they had placed in my belly (and literally was playing with it!) and they were able to drain over a liter of fluid out of me. Harper seemed to be a little upset over the decreased space for movement she now had but she responded really well from the procedure and I miraculously could breathe a little better and sit up a little straighter the next day.

About two weeks later on Monday, March 14,  Harper had an abnormal reading on one of the heart  strips and they weren't sure if it was because something was happening or because she was being stubborn. The specialist was called in to do an ultrasound. I remember telling Adam when I called him to fill him in "I think they are just over reacting, everything is fine. I feel fine, Harper is moving like crazy, everything is fine." {If you couldn't tell, fine was my new favorite word.} Part of me knows I had to say that to Adam though because I had to believe everything was going to be ok but in reality deep down I was afraid. I was terrified of what an abnormal finding might entail because I couldn't lose Hope. Hope was the only normalcy I was clinging to these days. Hope was my survival. Thankfully, when the specialist arrived that evening, I could take a deep breath because everything looked fairly normal. She informed me though that at this point the cord flow from my placenta to Harper was not as strong as they would like, but it was not "alarming" yet. With this type of finding the cord flow tends to either correct itself within a few days or will continue to deteriorate. Which if that was the case, Harper would be joining us soon.  The specialist said she would be back again later that week to monitor Harper and see how everything looked. That night she took a little extra time with me to show me my beautiful fighter. She showed me the breathing movements that  Harper was displaying inside of me {She told me she was going to be a strong little girl if she could still breathe with all of that surrounding fluid}.  She showed me how much hair she had. I could see all the fuzzy little follicles on her computer screen.  She even stated that she thought the swelling under the skin might be resolving a bit and she told me that her movement was still looking good. I remember thinking to myself and whispering to Harper after she left "See, we knew everything was fine."

Unfortunately, everything wasn't fine though; that hiccup was most likely the first sign that our world was about to change forever and Harper was about to have the biggest fight for her life, and unfortunately Mommy was about too as well. But I'll share more about that day later because for today, I'm going to cherish the time that Harper and I spent together. Our time laughing, watching HGTV, visiting with family and friends, snuggling her big brother and rejoicing; because for 3.5 weeks that's what we tried to do each and every day and it was so worth it. She was worth every back aching moment I spent in that hospital bed.

So today I am going to pick up another one of those broken pieces and place it lovingly where it belongs on this journey while I cherish each memory that I have of my beautiful daughter and thank God for the beautiful moments we had together because they were all worth it. She was so incredibly worth it.

* I Did It *

We made it through the holidays. That time of year where you find it becoming harder and harder to tuck those emotions deep inside. That time of year where everyone just wants to celebrate but you find yourself coming up with a reason to pull yourself out of bed. It's a time where it becomes more noticeable that we have lost this past year. So many feelings are swirling through the air: Joyful. Sad. Heavy Hearted. Wishful. Hopeful. Mournful. Happy.  {It's a tainted happiness for most, but we rejoice because it is happiness nonetheless.} 

There are times when your heart starts to race, when anxiety takes over and all of the questions and thoughts that you have been trying to avoid all year surround you.  I mean, How do I tell everyone what I'm thankful for at Thanksgiving? (a word that every mom of loss struggles with). There should be another stocking hung this year, or another pile of presents placed under that tree. I should be buying two Christmas outfits this year, for my two children, but yet I find myself shopping only for a two year old little boy. Pain. It just stabs at you because someone is missing and you pray that they are not forgotten. Celebrate? Come on, I'm not even sure I 100% know what that word means anymore.

But nevertheless, a mother of loss will attempt to slap that smile on her face, tuck those feelings deep inside and face the day (whatever it might bring) with as much strength as she bears.  Grief is the feeling that wants to overtake. Which is why for moments like this, it takes so much strength to find the joy. It takes strength to find the smile. It takes strength to find the peace. What once was easy at this time of year is now the hardest. It's so true when I say, the holidays are simply and utterly, exhausting.

This year, I was dreading the thought of ringing in the  "New Year". It reminded me that it was no longer "I lost my daughter earlier this year", it was now "I lost my daughter last March." and every year after that will be another. It's hard. Part of me still thinks this past year was all a dream. There are days I still find myself thinking, did this really happen? Will I still wake up and it all be a bad dream?  and then I lie in bed and look to my left and see the Urns of my little girl sitting upon her shelf showered with the words "WE SHALL FIND OUR LITTLE ONES AGAIN UP ABOVE" and I remember that it was not a dream by any means. That this was indeed, my reality.

At the beginning of this journey, I just wanted this year to be over, I wanted to forget everything that happened, I wanted to go back to the "old" me. But throughout this year I have changed, I have grown and I would never ask for this year back. I am so incredibly sad to see this year go because it was the year I got to meet an Angel, it was the year I learned more about myself than I ever thought imaginable. With the help of God, family, friends and my sweet Angel,  {I Did It}. I overcame this year. I fought hard and I never gave up. Accepting a new year is hard. A New Year means the recovery for 2017 has just begun, a fork in the road for this unimaginable journey has arrived and I must figure out which path to take. How does one start a new year with so much history behind them?

As my heart aches that 2016 has come to a close, I take a deep breathe, I slow down and I remember that this journey has just begun. I open my heart, I open my mind and I open my soul for what 2017 has to offer. I have to remember that just because 2016 is over, my daughters memory is not. It is just the beginning. 2017 will bring her first birthday, it will bring her first angelversary;  with that and with each coming year I will hold on to her. I will hold on to those three sweet days that I got to be with her here. I will hold on to those few hours that I got to hold her in my arms. I will FOREVER and always remember every part of her. I am her momma and she is my daughter and that will never change.  So the holidays are hard. True. But only because we loved unconditionally. There will never come a day I don't celebrate her with all of my heart, just like I do her older brother. It's a constant reminder that I truly am one lucky Momma.

So I start this new year, picking up some of the broken pieces and placing them back along this unimaginable journey so that I may find myself traveling down the path that will one day lead me back to my beautiful little girl. Happy 2017 Everyone, and to my little Angel Above {Every year will be your year; fly high beautiful girl}