Tuesday, October 5, 2010

Life should be cherished- written on 10-4-10

Eight weeks ago today was the day our miss Ella entered the world... wow! How much joy she has brought to us in such a short time! Being a mom is not at all how I imagined it would be. The things I thought would be "simple" are crazy hard, and the things I thought would be hard make me smile. I remember so well the last days before she was born, even though I had been so sick and I knew she was in danger I was emotional, because I was going to miss being pregnant. Yes it sounds crazy, being a mom kinda does that to you (no offence to mom's :) ) I guess throwing up over 350 times, nearly losing my baby twice, losing 15lbs, being in the hospital 3 separate times, staying in the hospital for over a month, and being practically bedridden all before she was even born makes you wonder why I thought I would miss any of it. I cried because even with every pain that came with it, having her in my life made everything worth it. I cried because I knew that once she was born the REAL pain would begin. It's true that watching your child suffer is far worse than suffering yourself. The night before Ella was born I was so afraid of what we were about to face, knowing that she was going to hurt and maybe not even survive. My baby girl was about to fight with everything she had for her life... and I was completely helpless. Once again I was reminded that I had to give her to God. That was so hard, I remember how vivid the feelings were inside me. The turmoil that gripped my aching heart. I remember feeling as though God had brought us so far and He had been so faithful but the other feelings that whaled up inside me were feelings of guilt. I remember wondering if I would be strong enough to love God no matter the outcome. You see I knew it was easy to praise and serve Him as long as He gave Ella to me to cherish... but what if He said no. I wanted to know I would be "ok". I don't think I could even begin to describe the love I have for this little girl. I would be curled up balling as I begged God to help me know I would be "ok" no matter what. I remember telling Him that "I would not be ok" I asked Him over and over to forgive me for the questions, I wanted to know that I would remain strong regardless but all I could do was pray for strength for each coming day. Well she is here and still I know she could be taken from me at any moment. Her heart could just give out, she could have a stroke... the list goes on, not to mention at the very least she has to undergo 2 more open heart surgeries. The truth is, I still have those questions in my head. I'm not sure if that's wrong or not, but I am continually striving to love God so much that He is the ONLY thing I need to be "ok". I guess as a parent the love you feel is in a way the most painful thing in life as well as one of the biggest blessings. It's strange but wonderful! Isn't it pathetic how hard it is to give your child to God, even though she is His already and He can do way better taking care of her than we could ever dream. lol I have to laugh at my stupidity. As the hours past the night before she was born, tears were cried, verses were read, songs were sung, and many prayers were said. I have tears in my eyes as I remember telling her how much I loved her and couldn't wait to see her beautiful face and touch her sweet hand. You see that night as I laid in bed I knew that it could be my last night with her, I was cherishing every single second. I wished her happy birthday at midnight and then we sang happy birthday to our daughter hoping that we would have many more opportunities to sing that song to her. The morning she was to be born was so unrealistic to me, I was scared to have the c-section since I was the first in my family I didn't really know what to expect. For the most part on the outside I was composed, inside I felt a whirlwind of emotions, I can't tell you how many times I wanted to grab Jon's hand and run away. I said I would stay pregnant forever if I knew she would be ok, being sick would have been a very small price to pay for my baby's life. But I knew I couldn't run anymore, it was time (after a seven hour delay). With tears in my eyes and fear in my heart I entered the operating room. Getting the spinal pretty much made me forget about everything else I'm not going to lie lol but yet the tears in my eyes were very much still there. Soon after the doctor began I remember all the sudden I couldn't stop smiling, since their was nothing I could do to stop it from happening I was going to cherish it! I looked at Jon anxiously then there it was I heard a very tiny cry and I began to laugh and tears of joy ran down my face as I realized, that was OUR baby. The baby we had worked so hard to meet, the baby that I never knew if I would get the chance to hear. I have never felt so much joy! They immediately held her up for Jon and I to see, by that time she had stopped crying and was a blueish grey color, Jon and I each reached up and took one of her hands. I was hooked, she indeed had stolen my heart. After about 5 seconds the doctor told me she had to send her away, I hesitantly said ok, I told Ella that I loved her and in a matter of minutes Ella, Jon, and a huge team of doctors were out the door. I was left there on the table still in surgery, with the best memory to relive over and over. Eventually I was moved to recovery. After several hours I was still unable to move my legs enough to get into a regular bed even though the pain was very strong (go figure lol) finally the decision was made to move me to my room on the stretcher. I wanted to see Ella so badly, I tried and tried to get up to get in a wheelchair, but I couldn't even hardly move. It was sometime around 3:30a.m before I finally tried to get some rest. After about two hours of sleep and 12 hours since she was born I was determined to get into a wheelchair. So I called Jon and my dad to come help me. It was about 7:30am on Aug. 10th that I FINALLY was able to go see Ella Dawn! I smiled and cried the entire way to the other hospital. Everyone that I saw on the way there would ask me if I was okay, I would try to tell them I was going to see my baby for the first time, but I could never say it without a huge smile and buckets of tears!  I had been up for 21 hours, had a baby, slept for 2 hours, had been up another 2 hours, and was in the most pain I have ever felt in my entire life when I went to see her. I had the post pregnancy hormones, plus I had just had a baby with a 2 severe heart defects... I was beyond emotional. I was so happy to see her but also sad, because I couldn't stand to see her and give her a kiss. My heart ached to hold her and kiss her. After a somewhat short visit I hesitantly went back to my hospital room to rest. The next day when I went to see her I was able to give her a kiss. The following day I was discharged from the hospital and I got to spend all day in her room. They let me HOLD HER for the very first time, I held her for about 4 or 5 hours straight. They finally made me put her back, but right before I did her stats began to rapidly drop, they had to "bag" her (pump oxygen for her) she was limp and looked lifeless. Fear swept over me unlike anything I had ever felt. She was fine, but I wasn't, that was a BIG reality check for me. It was at that moment that I first felt a glimpse of what it would be like to lose her now that she was part of our lives... and I was scared. I continued to improve leaps and bounds each day in my recovery, for that I was extremely grateful. It was exactly one week from the day she was born they took her back to do her first open heart surgery. The doctors let us walk with them to take her to the operating wing of the hospital, they stopped before entering the double doors and gave us a minute to tell her we loved her. You see we knew the risk of her having a good turn out with this surgery was slim, we said a very emotional "c ya later" and "I love you" and they whisked her away. As she disappeared through those doors, I clung on to Jon and weaped. Once again I was helpless... The surgery was supposed to take about 5 to 7 hours and we were supposed to get updates every hour. Well aan hour in we got an update, all was well and on track. The next hour past...nothing, yet another hour past, by this time we are getting nervous. We get a call, it goes like this: "is this the father of Ella Burk" "yes" "umm someone is going to come and get you to bring you to the consultation room and the surgeon will be up to talk to you shortly" "(silence)" "sir?" "uh, okay" "click" We looked at each other and we knew something had to be wrong, it had only been three hours. We prayed... HARD. We waited in that room for about ten minutes, but it felt like an eternity. Long story short the surgeon told us that she had more damage than he had anticipated and therefore he did a procedure that had never been done before! After he explained it all, we found out she was stable. We took a sigh of  relief and a deep breath. We had lots going on after that with her, but it was exactly one week before her next open heart surgery. All went well and she came out a fighter. The doctors all called her a "rock star" that's what they call babies that are doing great! We had a very scary time where we were on the verge of having to put her on a life support type machine it is basically a bypass machine, and it is a very last resort. After lots of prayers, and several hours we made it through without the machine. Once a nurse accidentally injected potassium instead of calcium strait into her heart... and yet she lived. She is a miracle indeed, and I am blessed daily by her life. I remember feeling like I was her mom but it felt very different then I had anticipated, I think it was the circumstances though because now it feels very natural to be her mommy! I remember one of the doctors telling Jon and I that we would need to leave the hospital for a night or we would get worn out before the end of our stay. So after being there for five days strait, we left late one night to sleep at the Ronald McDonald house. My mom and dad kept a watchful eye on Ella along with her nurse. I bawled, and called every three hours, needless say leaving Ella all night was NOT restful. I didn't go through nine months of torture to leave her now! We are a family, we stick together, apparently he underestimated this momma! Ella is a blessing far grater than I could imagine. I just told Jon the other day, even if we don't get to keep her, I'm so glad we got to get to know her! Coming home for the first time was amazing, life has been quite different then it was, but it is great! The responsibility of being a mom weighs heavy; however, being a heart mom really adds to the responsibility part. Constantly watching her breathing patterns, watching for any color changes in her skin, keeping her away from all germs, don't forget to change the diaper (one of her meds makes her go the bathroom often), give her her meds (3 meds, 2times a day 2 meds once a day,), pump, defrost milk for  her next feeding, feed the baby, watch her for on hour or so to make sure she isn't going to throw up (she is getting more calories then a non heart baby gets, and she has a hard time digesting sometimes) and the list goes on... I remember a few days after we got home we got up and were getting ready to give her  the morning meds Jon looked at me and said "we didn't give her her meds last night" me "WHAT!?!" That was a reminder that it is going to be very difficult to remember everything their is to remember being a heart mom (doctor appt. meds. ect.) I prayed and asked the Lord to remind me of anything important like that in the future. I felt like a horrible mom I forgot my child's heart medication!!! Can you say loser?! lol  Somehow we have made it to week 8 and so has she. The journey thus far seems so much longer than 8 weeks but I guess it's in a way a lifetime... Ella's lifetime and a special one at that!


  1. This is an absolutely beautiful post. Amy, it is beautiful to hear you explain this whole experience. Being a mother is untouchably the most amazing gift in this world. God is pretty awesome, huh? :) We continue to pray for the health of Miss Ella!

  2. Beautiful! I will be praying for your Ella and your family.

  3. I'm often lifting your family and beautiful Ella up in prayer!! This post is beautiful and I'm crying as I type. Y'all will remain in my prayers!

  4. Amy, it has been a joy to watch you grow up through up through the years. It is a greater joy to watch you become a mom. Yet it is even the greatest joy to watch you grow in the Lord. It is hard to go through trials and tribulations. You are doing it very well. Continue to trust in the Lord with ALL your heart. We love you and are praying for you.
    Kim Werner

  5. thank you for sharing. we pray for your family often.
    Nan Miller

  6. Amy and Jon,
    Your family is an inspiration. You speak with such peace and wisdom. Ella is in God's hands and just looking at her sweet smile tells me she knows that. Bless you, Jenny Chadney

  7. Amy,

    Thank you for sharing your heart. You ALL are in our prayers.

    We love you,

    Jeff and Becky


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