On March 17th, everything seemed like a normal day. We had our little hiccup on Monday, but ever since then everything appeared to look fine. We had talked about possibly having another amnio done to drain some more fluid off of me because I had started to retain again. (I can tell you this Momma was not exactly thrilled about repeating that procedure.) Tomorrow, the specialist would return to perform another US and assess the cord flow from the placenta to Harper and my doctor would consult with her regarding the results. I was told there was no need to worry yet, and that is just what I tried to do. Not Worry.
That night Levi and Adam came for their usual visit. I got out of the bed and into the wheelchair and around the hospital we went. It was the best part of my day for sure. I was allowed one wheelchair ride a day outside of my room and I always saved that for when Levi came to visit. He would sit on my lap and Adam would wheel us around. Most of the time we would end up on a little patio outside of the cafeteria where I could watch Levi run around and just get a little fresh air. Man, how I had missed that kid so much while Harper and I were in the hospital. We made it back to the room from our adventure that night and I climbed back into bed, with Levi right beside me. This night was a little different though, as the evening went on I started to feel "blah". I told Adam, it might be time to head home, that I just wasn't feeling great and thought I should lie down and see if maybe it was because I was tired. My left side just started to ache and I just felt like I couldn't shake it. I gave each one a kiss, told them I loved them and as Adam went out the door he turned around and said "I'm sure it's ok, but let's hope I don't end up back here tonight." and then he gave me a half smile. I knew what that half smile might have meant, but I told him "I'm sure it's ok, but I'll keep you posted."
Not more than five minutes after they left the ache I felt on my left side began to intensify. I called the nurse in just to let her know. I still thought it was just something silly, that they would tell me she had shifted or moved funny. I had my favorite nurse and she assessed me from head to toe and of course the monitors came back out for little Miss Harper. This time it appeared I was having contractions, and not just the small unnoticeable ones I had been having since I had been admitted. I remember thinking "No No No, this is not Labor. I have three more weeks until the ideal time to deliver. It can't be right now. Harper isn't ready." The nurse gave me some Tylenol, had me rest a bit and after about 45 minutes the pain disappeared about as quickly as it appeared. The contractions eased up on the machine as well. The nurse made me promise her that if I felt the pain again I would let her know. I promised and off to sleep I went eagerly awaiting what the specialist would have to say tomorrow. Either way, I always loved the days I got to see Harper on the monitor.
On March 18, 2016 I woke up to what I thought was just a freezing room. I remember scolding myself, "Kate, why did you turn the air down so much?" I was non stop shivering I was so cold. I texted Adam and told him I couldn't believe I did that. Fifteen minutes went by and I still couldn't stop shivering, it almost seemed like it was getting worse. What is going on I thought? I stayed in bed and just tried to get more comfortable and tried to warm myself. I felt so silly having to page the nurse because I felt cold. After 45 minutes, I realized it wasn't the room, it had to be me. I wasn't even able to stand up and walk to the bathroom because I was shaking so much. I texted Adam and told him I didn't feel well just to keep him posted. He asked if he should come and I told him "Not yet, I think I'll be ok, I"ll let you know." I paged the nurse and she brought me in a second heated blanket. It didn't stop the shivering but I immediately felt warmer. My vitals were checked and nothing seemed out of the ordinary. Stable blood pressure, stable temperature. So out comes the monitor again. As I lie there, with the monitor attached around my belly and Harper moving around like crazy I began to feel that left side pain again. I texted Adam, "I think I need you to come, I really don't feel well this morning." He responded quickly, "Ok I just made it to the office, let me check my desk and I'll be right over." The nurse entered my room again and I told her I couldn't lie in this position anymore, the pain was too much to bear. I had to sit up. I needed to be comfortable. She was so concerned about getting a good reading on the monitor and I told her we could adjust it but for now I had to sit up. Through the shivering I managed to make it to the edge of the bed. It eased the pain some and I began working on my breathing. I was trying to slow everything around me. The monitor was reading everything, I was contracting again. All I remember thinking in my head was "No No No, this is not happening today, I have three more weeks left before I am suppose to deliver. No No No, everything is fine."
Adam arrived, and I was so incredibly thankful to see him walk through that door. He sat down beside me and gave me the look of "everything will be fine". With him there, I instantly felt better, I instantly felt calm. He knew what to say at every moment, he knew we were ready to fight for our daughter. As the minutes passed by, the pain started back but this time no position was making it better. I tried to lie down, there it was. I tried to sit back up, there it was. I tried to stand up and walk, there it was. My doctor was notified.
I was put on a fluid only diet and an IV was to be started. The nurse checked my vitals again and still, all remained fine. As the nurse attempted to put the IV in I felt pain near that vein. I'm usually a really easy stick and my veins are really easy to find so I knew right away she had missed. I remember telling her "That stings and burns so badly". I watched her fumble around a bit and then heard her say, "Dang, that vein blew." She tried about two more times, each vein doing the same thing. She left to go get another nurse to attempt. The other nurse was apparently the "expert" of IVs. She explained she worked the trauma floor of the last hospital she was in and that IVs were just her thing. She also stated, I'm only going to try three times and then I'm done sticking. She tried once, the vein blew. She tried twice, the vein blew. She then asked for my vitals to be taken again. As the blood pressure machine deflated I saw her face at the reading. It wasn't quite panic, but it was borderline of extreme concern. My blood pressure had dropped to 70/30. She tried one more time to get an IV in me while the other nurses prepped my bed for me to be moved. She was able to get a pediatric needle in and that was called a success and down the hallway I was being moved, rather briskly.
Sometimes this moment and this day seem such a blur because everything happened so quickly that morning and sometimes I re-live this day with such clarity. I was wheeled into the pre op room where the anesthesiologist was waiting for me. I remember the first thing she said like it was yesterday, "Who put a pediatric needle in you?!" She was so annoyed, you could tell by her voice. I explained that my veins were blowing and after about 6 attempts that was the best they could get. She was explaining how because of my blood pressure (which was still extremely low and showing no signs of stabilizing) she may need to put me under for the procedure and therefore she needed to find a good vein. I told her it was fine and thought to myself "Oh boy, here we go again." She of course blew the first vein she attempted. I could tell she was frustrated with herself. While she attempted a second time the other nurses in the room were prepping me for surgery. It was chaotic. It was madness. It was non stop, all while Adam and I had no idea what was happening.
I was scared, I was sad, I was disappointed in myself. But there was also a part of me that shimmered a glimpse of Hope. We were going to meet out little fighter finally. We were going to get to see our beautiful baby girl. I remember during this time there was a ton of pleading with God on my part, and with Harper. "Please God, let her be ok." "C'mon Harper, you can do this."
The anesthesiologist finally got an IV in, she told me it was iffy but it was strong enough to last for what they needed to do. The room was still spinning with madness. Complete Chaos. I remember I would look to my left, where I would see Adam, sitting on the couch, being handed an OR room suit and being asked to put it on. He was just as confused as I was, and yet he never once showed me concern, he never once showed me fear. He was calm, he was collected, he too was soaking it all in. Looking for an answer. He was pure strength that day, he was pure love that day, he was everything Harper and I needed at that moment. I mean at this point, we still had no idea what was happening exactly?
After about a half hour my doctor walked briskly through the pre op doors. The most calm and authoritative face I had seen all morning and she was ready to bring some order to this chaos. "Ok, I need everyone to calm down. I'm not even sure she's in true labor, I want to get a few labs before we attempt anything, Adam, you can go ahead and take that OR outfit off and just relax a bit. Kate, how are you feeling?"
THANK YOU!
Finally, I saw the hope again. Maybe this isn't going to be her delivery day? Maybe everything will just look like a little hiccup like the other day and I will get to go back to my room and let Harper continue to fight inside of me? Maybe, just maybe everything will be ok?
My labs were performed and they had a rush order placed on them. After about 10 minutes I remember my doctor asking, "What is taking so long? Why don't I have the results back?" She left the room to only arrive back through the door in just a few moments. "Kate, I think it's time to deliver, your labs look like you might be going septic. I promise I've alerted NICU and they are completely ready for what might come." I looked over at Adam and it took everything in me not to break down at that moment. I knew this day was going to happen at some point. I was just selfishly hoping I had a few more weeks with her inside of me. I whispered to my daughter "Ok Harper, here we go, we've got this."
As they wheeled me into the OR room, Adam never left my side. He looked and felt so calm, ready to embrace whatever the next few minutes might bring. I could feel it, and because of him I was able to relax, I was able to focus on what I had to do now. Safely deliver this little girl. My doctor agreed to let me have an epidural instead of going fully under. Those words were music to my ears since the thought of a breathing tube being placed in me added more anxiety than was needed to this situation.
The epidural was placed and my blood pressure continued to be monitored very closely. Why could I still feel my stomach though? My doctor pinched me with the forceps, "Yep, I can still feel it." I could hear the nervousness in the voice of the anesthesiologist, "I think I need to put her under." I asked the doctor to give me one moment, I sat up just a little bit in order to see if I could get the medicine to flow downwards (I know that sounds so strange, but at that moment something told me to try it) and it worked! The doctor gave me one more last pinch before I was to go under and thankfully I could no longer feel it. I told her, I was numb and quickly and steadily without hesitation she went to work all while I just laid there, on that table, praying... over and over and over again.
I could feel them shifting me around, working vigorously to get Harper out quickly, safely and into the arms of the NICU team waiting in the OR room with us. How I wish she could have went to her Dad, how I wish I could have given her one quick kiss as she was born. As they were working on me behind the dreaded curtain I could here my doctor say, "Oh God, she's so much bigger than we thought." That one sentence will forever remain engrained in my memory. I wasn't sure what that meant; days before the specialist told me they thought the fluid under her skin looked better and that we were just seeing "fatty" tissue because she was going to be a plump little baby. Did she grow enough to be able to be saved? Was it fluid or just a chubby little baby? Oh please tell me she is going to be ok. I hear them say, "She's out!" and I can hear the rustling of the NICU team, calling out procedures and working so diligently to get Harper out of the OR room and into the NICU. {As from my last post, a successful Hydrops case was one where they could stabilize Harper enough to get her out of the OR room.} I remained on the table, focused on a specific tile on the ceiling because the room had begun to spin. I was listening so intently to what the NICU team was saying. My doctor peeked over the drape several times asking if I was ok to which I responded, "A little dizzy but just trying to stay focused."
Apparently during the surgery the anesthesiologist was giving me rounds of a medication to help stabilize my blood pressure that I was unaware of. My blood pressure was continuing to drop and my OB was having a hard time getting my bleeding to stop. My body was experiencing something called DIC, my blood wasn't clotting due to the stress that it was under. I never once heard her voice crack, or an ounce of panic come from her. Until this was all over, I had no idea the situation I was in myself, that I would end up having to fight for my life too.
The NICU staff was able to stabilize Harper enough to take her out of the OR, as my OB continued to attempt to stop the bleeding she told Adam to go follow our little girl, that I would be ok. Adam walked to the other side of the OR where he could take a few pictures of our beautiful baby before they whisked her out the room. Adam gave me a kiss and away he went with Harper but before they left the room, my OB told me to look to my left and the NICU doctor help up my baby girl before they left the room. My OB informed me that Harper's Apgar scores were looking better than she would have imagined and that she had a score of 7 before she left the OR. I took that as such a positive sign. I remember thinking I could relax when I heard that bit of information and in that moment my favorite word flooded my being again.... HOPE. She was going to pull through this, WE were going to pull through this.
Adam was back in the OR about 10 minutes later. They were about to begin a procedure to place a permanent chest tube drain in her so he was asked to step out. He made it back just in time to follow me to the ICU, where I was being escorted by the two doctors who operated on me and a couple of nurses. My OB never left my side through this entire procedure. I'm not sure how she does it, but to say she was my Hero that day is most definitely an understatement. I always knew I had the best OB, and this moment just defined exactly what I already knew.
At this point they had removed my epidural before I could leave the operating table down in the OR room. They were nervous about an open site that I may bleed from since I wasn't clotting like I should. PAIN. Oh boy, did I feel it. I felt everything that had just happened to me and more. Now besides the emotional strain that I was under, I had the physical pain as well. They gave me a dose of pain meds but it dropped my blood pressure too low. At that moment, I knew that I was just going to have to fight through this. I told myself "I got this." As I was lying there, test after test was being ordered. My kidneys were going to be assessed and the hospital was currently matching my blood type so that I could receive a blood transfusion as soon as possible. The ICU doctor came in to assess me, "Well the good news is, your doctor took care of the hard part for me and stopped the bleeding. Now let's see if we can get you feeling better."
Please tell me Harper is doing ok?
Once my blood pressure stabilized I was given a morphine pump to aide with the pain. I was hooked up to my blood transfusion and Adam had been back to the NICU to take some more picture of Harper for me and to sit with her for a bit. She was such a beautiful baby, enduring the biggest fight of her life. In the hospital I thought I had prepared myself for what they were going to have to do to help her survive after birth. I knew there would be drains, I knew there would be a ventilator, I knew she would be in the NICU... but nothing actually prepares you for watching your sick child fight so strongly. Not a moment went by, when they were working on me in the ICU that I wasn't thinking of our little girl on the floor below me. I was determined to get better, because I was going to meet my daughter. Throughout that day, and due to the medicine, most things become a little fuzzy; I remember I was in and out of sleep. Adam was back and forth between spending time with me and spending time with our daughter. How exhausting that day had to be for him? But for that day, we were both holding strong, Mommy and Daughter, for that day and two others we would be an earthly family of four and for that I am so, so thankful.
For the rest of that day, Harper was stabilized. Two drains to assist with getting the fluid off of her, several tubes that were used for medication and a ventilator to help her breathe were all I remember. She was sick, but she was fighting. She lost a pound and a half of fluid within 24 hours, but at 34 weeks she was one of the biggest babies this NICU had ever seen. From the outside, once the fluid came off, she looked like a healthy 38 week baby, weighing the same as her older brother and looking almost identical to him. Except this little girl had blonde hair, this little girl had "Mommy's Hair". She was perfect.
Welcome to the story of how Harper came into this world on March 18, 2016. Mommy and Daddy were instantly in love and knew not a day would go by that she wouldn't be whole heartedly a part of our lives. She was our family and we were hers. So, in honor of my beautiful daughter's birthday, I will once again pick up another broken piece on this Unimaginable Journey and beautifully place it back where it belongs all while celebrating her earthly life with lots of love, laughter and sweet, sweet memories. We love you so much Harper Lynn.
* HAPPY FIRST BIRTHDAY in Heaven SWEET GIRL! *
Saturday, March 18, 2017
Sunday, February 26, 2017
Tested Faith
Prayer. Something that has always come so easy for me, a way to talk to God to tell him about this glorious life and all the goodness I have felt. A way to show my appreciation, my gratitude and my love for Him. A small gesture I am so used to performing to explicitly portray my thankfulness for this life that I have been given.
This plain word and simple little act has changed so much throughout this grieving process. After Harper passed away prayer quickly turned into questions, soulful pleading and misunderstandings. What once was used as a tranquil way to say thank you turned into a catastrophic plea for answers. Why? How? When? ... all of these words started my new attempts of prayer. Is it possible to even be thankful in a time like this? Will I ever find the beauty in this immense sorrow that now overtakes me? Joy, does that word even have a meaning these days? Those were the thoughts that now ran rampant through my mind at the thought of prayer.
After Harper left this world I felt myself searching for a way to find fullness again, a way to bring back the naïve feelings of life before loss. Anything to avoid the pain, I would do anything to avoid the deep ache that tugs at my heart, the tug that some days seems to be so much that it brings me to my knees. Church, the house of God, it has to be there that I will feel re-connected again, it has to be there that my soul will find it's way again, it just has to be. Do I ask for forgiveness? Do I sing his praise? Do I mourn the death of my daughter or do I rejoice knowing she is with our Savior? Where were my answers...
I learned though that the answer is: All of the Above and None of the Above. It doesn't make sense, I know this. But that is the answer. There is no yes and there isn't a no. There is just Faith. There is just God. There is just belief. That is what you cling to, that is what you hope for and that is what you search for. We BELIEVE. It becomes a magical word that we (Parents of Loss) learn to live by. Rooted deep in our Hope. It's not much, but it's enough most days.
I received communion several times while I was on bed rest in the hospital. It was a quiet few minutes, where we would close our eyes and pray to our Lord for the health of Harper. It was a time where I could cherish that little human growing inside of me. It was a time where I was able to recognize the miracle of life and how precious it can be. It was a time that I looked forward to each and every day. So much so, that when I was discharged from the hospital I had this insane pull towards church. I felt that the only way I could feel those feelings again, the only way that I could feel connected to my daughter again was to attend mass. I mean, wouldn't it be in the Lord's house that I would feel the safest? Wouldn't it be in the Lord's house that maybe, just maybe, some of my questions would be answered? Isn't it in the Lord's house that I would see my little girl again? (maybe not physically, but spiritually). I yearned for the strongest connection that I could possibly gain. I needed something to fill me because at that time, my soul was running near empty.
I did not get the answers I was looking for unfortunately. I did not feel like I was fulfilled when I walked through those doors. Instead, when I attended Mass (the Easter season nonetheless) all I could see filling the room was joy, perfection, glory and praise. For the first time in my life, I truly felt alone. Every time I attended mass for the first few months, it took so much strength inside of me to fight the tears back. Why you ask? Because everything surrounding me looked like perfection and appeared so put together; all while I felt so broken inside. There was the lovely family of four sitting in front of us, maybe they too should be a family five, but at that moment, their life looked so ideal. Or how sweet was that little girl sitting four rows and to the right of us all dressed up in her frilly dress and large "Texas sized" bow. When I looked around, all I could feel was sadness inside of me. All I could feel was pain. That sharp, stabbing, aching pain that cuts me deep every time. I knew I had to take a break. Not from God, I needed him more than ever, but I had to take a break from his home. I needed to bring Him into mine, before searching for Him in His.
But...
With time and healing, I was able to see the light again when I returned. With time and healing I could watch that sweet little girl four rows in front of us and smile. With time and healing I didn't have to fight back the tears anymore (or at least, as often). With time and healing I didn't feel so alone anymore. With time and healing my prayers were resembling some normality again. As we approach Harpers First birthday and I begin to relive the beginning of {This Unimaginable Journey} I am feeling more full than I could have ever imagined I would feel. I am feeling more alive. I am full of hope and I am full of peace. Peace in knowing that my daughter still lives within me. Peace in knowing that she is our child and Peace in knowing that she will always be loved and will not be forgotten.
Of course there is still sadness, there will always be sorrow, but those days are becoming less and less. Those days don't define me anymore. The days that define me are the ones spent celebrating her life. The moments that I get to tell Levi he has a baby sister. The moments that I watch him point to a picture of an angel and say "Harper". (I'm pretty sure he's going to think Angels are called "Harper" for quite awhile). I look forward to our prayers at night, the prayers where Levi says her name { God Bless Mommy, Daddy, Harper and Spaten.} I cherish the small little signs that my heart tells me were sent by her. Those are the moments that define me. My two beautiful, amazing, and talented children and my husband who never ceases to amaze me. Moments with them are what I cherish most and for that I am so very very thankful.
So with time and healing and with hope in my heart I will pick up another broken piece on this Unimaginable Journey and place it lovingly where it belongs because in a few short weeks we will be celebrating Harper's First Birthday, a day I wasn't sure I would be able to make it too, let alone, look forward too. This journey has been hard but this journey has been so incredibly rewarding as well. To my beautiful daughter up above "Mommy Loves You!".
This plain word and simple little act has changed so much throughout this grieving process. After Harper passed away prayer quickly turned into questions, soulful pleading and misunderstandings. What once was used as a tranquil way to say thank you turned into a catastrophic plea for answers. Why? How? When? ... all of these words started my new attempts of prayer. Is it possible to even be thankful in a time like this? Will I ever find the beauty in this immense sorrow that now overtakes me? Joy, does that word even have a meaning these days? Those were the thoughts that now ran rampant through my mind at the thought of prayer.
After Harper left this world I felt myself searching for a way to find fullness again, a way to bring back the naïve feelings of life before loss. Anything to avoid the pain, I would do anything to avoid the deep ache that tugs at my heart, the tug that some days seems to be so much that it brings me to my knees. Church, the house of God, it has to be there that I will feel re-connected again, it has to be there that my soul will find it's way again, it just has to be. Do I ask for forgiveness? Do I sing his praise? Do I mourn the death of my daughter or do I rejoice knowing she is with our Savior? Where were my answers...
I learned though that the answer is: All of the Above and None of the Above. It doesn't make sense, I know this. But that is the answer. There is no yes and there isn't a no. There is just Faith. There is just God. There is just belief. That is what you cling to, that is what you hope for and that is what you search for. We BELIEVE. It becomes a magical word that we (Parents of Loss) learn to live by. Rooted deep in our Hope. It's not much, but it's enough most days.
I received communion several times while I was on bed rest in the hospital. It was a quiet few minutes, where we would close our eyes and pray to our Lord for the health of Harper. It was a time where I could cherish that little human growing inside of me. It was a time where I was able to recognize the miracle of life and how precious it can be. It was a time that I looked forward to each and every day. So much so, that when I was discharged from the hospital I had this insane pull towards church. I felt that the only way I could feel those feelings again, the only way that I could feel connected to my daughter again was to attend mass. I mean, wouldn't it be in the Lord's house that I would feel the safest? Wouldn't it be in the Lord's house that maybe, just maybe, some of my questions would be answered? Isn't it in the Lord's house that I would see my little girl again? (maybe not physically, but spiritually). I yearned for the strongest connection that I could possibly gain. I needed something to fill me because at that time, my soul was running near empty.
I did not get the answers I was looking for unfortunately. I did not feel like I was fulfilled when I walked through those doors. Instead, when I attended Mass (the Easter season nonetheless) all I could see filling the room was joy, perfection, glory and praise. For the first time in my life, I truly felt alone. Every time I attended mass for the first few months, it took so much strength inside of me to fight the tears back. Why you ask? Because everything surrounding me looked like perfection and appeared so put together; all while I felt so broken inside. There was the lovely family of four sitting in front of us, maybe they too should be a family five, but at that moment, their life looked so ideal. Or how sweet was that little girl sitting four rows and to the right of us all dressed up in her frilly dress and large "Texas sized" bow. When I looked around, all I could feel was sadness inside of me. All I could feel was pain. That sharp, stabbing, aching pain that cuts me deep every time. I knew I had to take a break. Not from God, I needed him more than ever, but I had to take a break from his home. I needed to bring Him into mine, before searching for Him in His.
But...
With time and healing, I was able to see the light again when I returned. With time and healing I could watch that sweet little girl four rows in front of us and smile. With time and healing I didn't have to fight back the tears anymore (or at least, as often). With time and healing I didn't feel so alone anymore. With time and healing my prayers were resembling some normality again. As we approach Harpers First birthday and I begin to relive the beginning of {This Unimaginable Journey} I am feeling more full than I could have ever imagined I would feel. I am feeling more alive. I am full of hope and I am full of peace. Peace in knowing that my daughter still lives within me. Peace in knowing that she is our child and Peace in knowing that she will always be loved and will not be forgotten.
Of course there is still sadness, there will always be sorrow, but those days are becoming less and less. Those days don't define me anymore. The days that define me are the ones spent celebrating her life. The moments that I get to tell Levi he has a baby sister. The moments that I watch him point to a picture of an angel and say "Harper". (I'm pretty sure he's going to think Angels are called "Harper" for quite awhile). I look forward to our prayers at night, the prayers where Levi says her name { God Bless Mommy, Daddy, Harper and Spaten.} I cherish the small little signs that my heart tells me were sent by her. Those are the moments that define me. My two beautiful, amazing, and talented children and my husband who never ceases to amaze me. Moments with them are what I cherish most and for that I am so very very thankful.
So with time and healing and with hope in my heart I will pick up another broken piece on this Unimaginable Journey and place it lovingly where it belongs because in a few short weeks we will be celebrating Harper's First Birthday, a day I wasn't sure I would be able to make it too, let alone, look forward too. This journey has been hard but this journey has been so incredibly rewarding as well. To my beautiful daughter up above "Mommy Loves You!".
Sunday, January 29, 2017
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 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.
Tuesday, January 10, 2017
* 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}
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}
Friday, December 30, 2016
Remembrance, Honor and HOPE
At the beginning of December we made a quick trip home to partake in the candlelight ceremony at the Angel of Hope to commemorate and remember our sweet daughter, Harper. Every year on December 6th they honor the names of children gone way too soon. It was beautiful. It was cold. It was sad. It was memorable. I can't fully explain how one 30 (ish) minute ceremony had so much impact on my soul and on my heart. There were many tears, there were smiles, there was heartache and there was of course my favorite of all; there was joy.
The president of the non profit organization began the ceremony, speaking eloquently and beautifully; he reminded us all of the meaning of the Angel of Hope: remembrance, honor and of course, Hope. He began to tell a story, a story that each and every person standing there that night, had somehow been affected by. As his voice began to crack we all knew what was coming, he too had lost a child. In 2003 his son was born still. The tears began flowing. I sometimes forget (or block out) the notion that these feelings will never go away. That 13 years from now, I will still be the mother of an angel. I will still ache for her every day until that day 13 years from now. And I will continue to ache for her for countless years after. Love. We can blame love for that ache and I am ok with that.
As the ceremony continued and the names of the children began to be read I looked around at all of the faces. There were hundreds of people there. Some were new to this game (like me) and some had been coming for a very long time. But what I noticed the most was how we all looked the same. We all had joined a "club" that no one wanted to ever be a part of. It's strange but true when I say: when you lose a child and you meet another mother of an angel, you may be a complete stranger and yet at the same time there is such a strong connection. It's a bond that I feel is given to us to help us get through the horrible times; to help lift us up when we need it the most. It's a part of our broken hearts, mending and grieving together. So as I looked around, I could feel that my heart yearned for each mother I saw standing there.
The music began and the tears began to flow, this was my new reality. At times I can hold the tears back, I can numb the pain inside, but this day, there would be no numbing. It was an official reminder: my daughter died. It was a beautiful song, reminding us all of the Angels around us. The names began to be read, for the first time I was thankful that my last name was at the very end of the alphabet. I needed some time before I heard her name. As the letters drew closer to W, I mustered up the strength and I readied myself. "Harper Lynn Wear", it was our turn to go stand in line and to place our flower at the foot of the angel. I was holding back the tears the entire time in line. As Levi, Adam and I finished placing our single white rose for our favorite angel I was stopped by someone I knew. Someone I hold dear in my heart and the tears began to flow and I couldn't stop them this time. We both shared a pain now, one neither one of us ever agreed to bear, but yet here we were, still standing and still breathing. It was a much needed moment for this momma, to be able to let down my guard and to be able to breathe once again.
As the ceremony came to a close, I held Levi tight and I said a prayer. I know Harper is no longer suffering, that instead I am the one suffering for her. But every day that goes by, I can't help but wish she was here, I can't help but wish that I could see her smile, that I could hold her close that I could hear her giggle. So instead, I hug her brother and I blow a kiss towards her ashes each and every night. I know that she is still with us, I know that she is watching over us all and some days I remember that and think "how did I get so lucky?". She is mine and I am hers and for that I will be eternally grateful.
So for today, I will pick up another broken piece that had been shattered when I began this unimaginable journey and place it delicately where it belongs remembering my beautiful daughter and the joy she has brought to this family from afar.
The president of the non profit organization began the ceremony, speaking eloquently and beautifully; he reminded us all of the meaning of the Angel of Hope: remembrance, honor and of course, Hope. He began to tell a story, a story that each and every person standing there that night, had somehow been affected by. As his voice began to crack we all knew what was coming, he too had lost a child. In 2003 his son was born still. The tears began flowing. I sometimes forget (or block out) the notion that these feelings will never go away. That 13 years from now, I will still be the mother of an angel. I will still ache for her every day until that day 13 years from now. And I will continue to ache for her for countless years after. Love. We can blame love for that ache and I am ok with that.
As the ceremony continued and the names of the children began to be read I looked around at all of the faces. There were hundreds of people there. Some were new to this game (like me) and some had been coming for a very long time. But what I noticed the most was how we all looked the same. We all had joined a "club" that no one wanted to ever be a part of. It's strange but true when I say: when you lose a child and you meet another mother of an angel, you may be a complete stranger and yet at the same time there is such a strong connection. It's a bond that I feel is given to us to help us get through the horrible times; to help lift us up when we need it the most. It's a part of our broken hearts, mending and grieving together. So as I looked around, I could feel that my heart yearned for each mother I saw standing there.
The music began and the tears began to flow, this was my new reality. At times I can hold the tears back, I can numb the pain inside, but this day, there would be no numbing. It was an official reminder: my daughter died. It was a beautiful song, reminding us all of the Angels around us. The names began to be read, for the first time I was thankful that my last name was at the very end of the alphabet. I needed some time before I heard her name. As the letters drew closer to W, I mustered up the strength and I readied myself. "Harper Lynn Wear", it was our turn to go stand in line and to place our flower at the foot of the angel. I was holding back the tears the entire time in line. As Levi, Adam and I finished placing our single white rose for our favorite angel I was stopped by someone I knew. Someone I hold dear in my heart and the tears began to flow and I couldn't stop them this time. We both shared a pain now, one neither one of us ever agreed to bear, but yet here we were, still standing and still breathing. It was a much needed moment for this momma, to be able to let down my guard and to be able to breathe once again.
As the ceremony came to a close, I held Levi tight and I said a prayer. I know Harper is no longer suffering, that instead I am the one suffering for her. But every day that goes by, I can't help but wish she was here, I can't help but wish that I could see her smile, that I could hold her close that I could hear her giggle. So instead, I hug her brother and I blow a kiss towards her ashes each and every night. I know that she is still with us, I know that she is watching over us all and some days I remember that and think "how did I get so lucky?". She is mine and I am hers and for that I will be eternally grateful.
So for today, I will pick up another broken piece that had been shattered when I began this unimaginable journey and place it delicately where it belongs remembering my beautiful daughter and the joy she has brought to this family from afar.
Saturday, November 12, 2016
Where there is Joy, there is also Sadness
Joyous Moments. They feel so different these days. They are happy, they are momentous, they are exciting. Yet there is more. There is a deep lingering of sadness that underlies the joy. Something I've never experienced before. How can someone be so incredibly happy and yet so incredibly sad at the same time? I've dreamed of some of these joyous moments my whole life (some of you know exactly that one moment I'm talking about: Yes, the Cubs entering the World Series and WINNING of course) and yet here I am, jumping from the insides and wanting to hide at the same time. I've asked myself "Is this feeling of sadness not really sadness, but rather guilt from feeling happy?" I'm not sure to be honest. These emotions are so raw and so new at times that it can be tiresome to attempt to sort them out. I'm pretty sure my other momma's of loss out there could raise their hands and say "Amen" to that statement.
I remember in those first few days after losing Harper the sense of feeling numb was about all that I could take. I didn't know what to think. I didn't know what to feel. I didn't know what to say. And I knew part of me was afraid to feel. I remember thinking at one point "I can't believe that I will feel this sad for the rest of my life." I knew at that moment how much of a life changer losing Harper would be. My worst nightmare had officially become my reality. It would be an unwelcomed change at first and it would be a change that I knew would never go away. It was what I labeled as my "new norm". There would now be the "before Harper" era and the "after Harper" era and I was going to have to find a way to cope with that and to understand that. It has not always been easy. In fact, it's been really really hard.
I find myself these days, when re-living my past, labeling each memory and each picture as "Before Harper" or "After Harper". My sense of myself and my family has changed drastically. I have grown. Some for the better, and some for the "yet to be determined" column. Mostly because I'm still exploring, I'm still figuring this new life out and I'm still mourning. Heavy mourning. And that's ok. I once thought I was immune to great sorrow. That surely there was no way it would ever find it's way into my life. But I was wrong. That was the "Before" version of myself and sadly that part of me doesn't exist anymore. Sure, I still believe that life is filled with happiness, love, and joy... I haven't lost that, but I know now that life is full of so much more. Life is full of deeper meanings, of understanding this world we live in and living it in the absolute fullest. It's about taking our experiences, growing from them and honoring them. It's about living with no regrets. It's about discovering that life is not black and white. Life is full of gray. So much gray. And if we allow ourselves to open up, to flourish and to nurture this life that we live, it will be the gray that gets us to the other side, that humanizes us. It will be the part that defines who we are.
So don't be afraid of the gray. I was. I was absolutely terrified of the gray. It's full of the unknown. It's full of the unimaginable. It's unorganized. It's rough. And yet, it has been so rewarding. So incredibly healing and I know I have grown immensely from my time there.
Explore. Know that each day is a new day. A day in which we have been given life. A life that is full of so much deeper meaning and understanding. A life that is full of unimaginable moments. A life that is full of love, joy, laughter and cherished moments. A life that experiences sadness, darkness, despair and confusion. A life that challenges us. A life that strengthens us. A life that God has given us. Walk it. Live It. Love It and Learn from It.
That means today I will continue to walk this long and unfamiliar path on this unimaginable journey, I will walk through the gray and smile through the sadness and I will pick up a broken piece and I will place it gently where it belongs knowing that one day I will see my little one again up above. *I Love you Harper Lynn
Tuesday, October 11, 2016
Can I really be "Thankful" at a time like this?!
I've taken a little break from writing lately since my emotions and life have been getting the best of me. It's been crazy. It's been messy. My motto the past few weeks has been "to stay as busy as possible" because when one is busy, one doesn't haven't to stop and reflect as often. And let's just say reflection has not always been my friend these days. As I was going through my fall decorations to start prepping for Pumpkin Spice and Football season I was taken aback by a sign I forgot that I hang every year above the fireplace. A sign that has always been a simple reminder to me, one that I've tried to live my life by fully. A sign that simply reads...
THANKFUL.
It's a sign that I hate to say, I have not had the courage or the strength to hang yet this year. It's a word I've been reflecting an awful lot on... THANKFUL.
Am I thankful? How can I be thankful after everything that has happened? I am blessed and I am grateful, but am I really thankful? Am I really suppose to read this word everyday? Why does this word taking my breath away every single time I see it?
"I just can't", that's what I've been telling myself. I'm not ready, it's too much. I need time.
Oh that ache, that deep ache that tugs at my heart over and over has been working overtime lately. It's making me feel feels that I know I am not ready for at this moment. I'm grieving, I'm trying to move forward and I'm trying to see the good in each deed and each person that comes my way. I'm trying so hard some days, and now I am somehow suppose to be THANKFUL?
I looked at Adam the other night and said "I think I need to buy a new fall sign for the fireplace" and he stared at me puzzled (partially because I'm pretty sure he has no idea what our "fall" sign even says until it's put up, but that's totally ok) He quickly uttered the word "Why?". I told him exactly how I felt, "It's because it reads "Thankful" and I just really don't think I feel Thankful this year."
His response to this is exactly why I love this man. He has always been my clarity when my emotions become too involved. He has always been my strength when I feel weak in my knees and in this moment his words found a way to pick me back up. He looked me straight in the eyes and said.. "Kate, that seems a little harsh. Aren't you thankful for Levi? Aren't you thankful that you are alive? Because I am"
{A part of my story I haven't shared yet is how the day Harper was born, my body began to fail. My placenta began to pull away and my body went into shock, I was bleeding out and my blood pressure was dropping fast. As soon as Harper was whisked away to NICU and as soon as my doctor could get as much of my bleeding stopped my epidural was pulled and I was escorted by my doctor and the rest of the surgical team to ICU where I would spend the next 30 hours. I was immediately started on a blood transfusion and later followed with a platelet transfusion. I didn't realize how serious the situation had turned until my follow up appointment when my doctor told me "You were the last person I thought I'd ever have to worry about losing on the table." My eyes were opened. That day, I lived for a reason. That day I remained here on earth, a wife to the most perfect husband and a mother to two beautiful children on earth.}
When I look back at this moment, I remember. I remember that I was left here for a purpose and I needed Adam to remind me of that, to remind me that I can be THANKFUL this year and that it's a word I shouldn't be ashamed to use. I will never be thankful for what happened to my daughter, I know this. But I can be thankful for so much more.
I am thankful for life.
I am thankful for joy.
I am thankful for Levi's laughs, his hugs and the love he brings.
I am thankful for my amazing husband.
I am thankful for friends and family who have picked me up at the lowest of times.
I am thankful for loving a tiny soul so much that I have a reason to be sad.
I am thankful. I can be thankful.
I've learned and accepted now that "Thankful" no longer has to be a scary word for me and I've discovered how it means something so much more to me. I've stopped looking at the superficial some days and found the deeper meaning to life. I have to open my eyes to my surroundings, I have to live in the moment and I have to treasure each and every day. Harper opened my eyes to this world and for that I am Thankful. She helps me flourish as a mom and a wife each day of my life and for that I am so thankful.
So today I am going to be thankful, thankful that I am able to pick up another broken piece on this unimaginable journey and place it delicately where it belongs enjoying each and every moment with my incredible family and knowing that this journey will bring me one day closer to seeing my little Angel.
THANKFUL.
It's a sign that I hate to say, I have not had the courage or the strength to hang yet this year. It's a word I've been reflecting an awful lot on... THANKFUL.
Am I thankful? How can I be thankful after everything that has happened? I am blessed and I am grateful, but am I really thankful? Am I really suppose to read this word everyday? Why does this word taking my breath away every single time I see it?
"I just can't", that's what I've been telling myself. I'm not ready, it's too much. I need time.
Oh that ache, that deep ache that tugs at my heart over and over has been working overtime lately. It's making me feel feels that I know I am not ready for at this moment. I'm grieving, I'm trying to move forward and I'm trying to see the good in each deed and each person that comes my way. I'm trying so hard some days, and now I am somehow suppose to be THANKFUL?
I looked at Adam the other night and said "I think I need to buy a new fall sign for the fireplace" and he stared at me puzzled (partially because I'm pretty sure he has no idea what our "fall" sign even says until it's put up, but that's totally ok) He quickly uttered the word "Why?". I told him exactly how I felt, "It's because it reads "Thankful" and I just really don't think I feel Thankful this year."
His response to this is exactly why I love this man. He has always been my clarity when my emotions become too involved. He has always been my strength when I feel weak in my knees and in this moment his words found a way to pick me back up. He looked me straight in the eyes and said.. "Kate, that seems a little harsh. Aren't you thankful for Levi? Aren't you thankful that you are alive? Because I am"
{A part of my story I haven't shared yet is how the day Harper was born, my body began to fail. My placenta began to pull away and my body went into shock, I was bleeding out and my blood pressure was dropping fast. As soon as Harper was whisked away to NICU and as soon as my doctor could get as much of my bleeding stopped my epidural was pulled and I was escorted by my doctor and the rest of the surgical team to ICU where I would spend the next 30 hours. I was immediately started on a blood transfusion and later followed with a platelet transfusion. I didn't realize how serious the situation had turned until my follow up appointment when my doctor told me "You were the last person I thought I'd ever have to worry about losing on the table." My eyes were opened. That day, I lived for a reason. That day I remained here on earth, a wife to the most perfect husband and a mother to two beautiful children on earth.}
When I look back at this moment, I remember. I remember that I was left here for a purpose and I needed Adam to remind me of that, to remind me that I can be THANKFUL this year and that it's a word I shouldn't be ashamed to use. I will never be thankful for what happened to my daughter, I know this. But I can be thankful for so much more.
I am thankful for life.
I am thankful for joy.
I am thankful for Levi's laughs, his hugs and the love he brings.
I am thankful for my amazing husband.
I am thankful for friends and family who have picked me up at the lowest of times.
I am thankful for loving a tiny soul so much that I have a reason to be sad.
I am thankful. I can be thankful.
I've learned and accepted now that "Thankful" no longer has to be a scary word for me and I've discovered how it means something so much more to me. I've stopped looking at the superficial some days and found the deeper meaning to life. I have to open my eyes to my surroundings, I have to live in the moment and I have to treasure each and every day. Harper opened my eyes to this world and for that I am Thankful. She helps me flourish as a mom and a wife each day of my life and for that I am so thankful.
So today I am going to be thankful, thankful that I am able to pick up another broken piece on this unimaginable journey and place it delicately where it belongs enjoying each and every moment with my incredible family and knowing that this journey will bring me one day closer to seeing my little Angel.
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