Monday, June 6, 2011

LIFE- has so much fear and loss

Loss it is overwhelming. It is emotional. It is pain.  Sometimes this new world I find myself in makes me want to run away! I can't tell you how many of my "friends" I have seen experience the loss of their heart baby. I just don't want any of it anymore! I am so tired of the loss the sadness the death! I feel like my heart can't bare anymore. I can't help but put myself in there place in my mind every time I hear of a death... especially when one of the sweet babies happen to have one of Ella's conditions. In the last month I have been closely following a new baby girl named Timber. Timber had HLHS. Her mom needed a friend that knew what she was going through. I was able to step up to the plate and did so with honor. I somewhat keep myself at a distance when it comes to heart family's... I know that sounds absolutely selfish, but right now it's just what I have to do. I share openly on the blog in hopes that someone can benefit, but as far as being part of the world, it is very heavy. I hope one day to be able to be there for any heart mom any time. But until we are past the surgeries and Ella is well on her way to recovery the only way to keep my sanity is to focus and try to be around normal healthy people with normal activities. I feel like I want to give to others, but emotionally I just don't have much in me left to give. It is just too close to home right now. Occasionally for reasons unknown to me I feel God leading me to some heart mom's specifically. I pray for them, follow them, and do what I can. I have a handful of heart babies that God has placed heavily on my heart. One was sweet Timber. I was contacted by a family friend's niece about her Mom's co-workers niece who had just been born with HLHS. For some reason I felt drawn to her and felt the Lord strongly leading me to take her mom Jennifer under my wing. Answer any questions, pray for her, lift her up. I have been texting everyday or so with her mom checking in on this sweet little girl. Things slowly went down hill and today Her mom texted me that she had passed away this evening. I read the text and thought to myself what on earth do I say to this mother's grieving heart? I found myself offering sympathy and prayers... what more is there to give? So much to bare. I held back tears as I felt like I was going to fall apart by all the weight. How much more is this mother feeling??? It was a numb like feeling of disbelief and at the same time I had a "feeling" she was heading the wrong way for some time now. Through out the evening tears have surfaced and it's all I can do to keep them back, after all this is part of our life now. It is hard to bare, and moments like this is when I think about the next surgery that we have yet to face. When she will be old enough to know what is happening, to beg me to help her, to stop them. Another open heart surgery with all the risk that entails.I just want to beg God not to make us go through this again. I don't know how much more Ella's heart can handle, let alone my heart. I don't know what our future holds, but tonight my heart is heavy and the fear is great.

Friday, February 11, 2011

LIFE- can be lonely

I have missed so so so much over the past 14 months. Church, friends, get togethers, parties, family dinners, holidays, funerals, shopping, date nights, hair appointments, movies, girls night... everything. And although being with Ella is amazing, tonight I am missing my niece jasmine and savanna's birthday... and I feel sad, very very sad. 

Friday, February 4, 2011

LIFE- is so deep

Well so many things go through my mind daily. So many things have changed, some for the good some not so much. I am a mom. I love it more than words. The road to motherhood was hard, long, and nearly took my life. I feel at times that I have lost myself, I feel strange, I feel that Ella is all the good I have. I honestly don't remember the last time I felt beautiful, it takes so much effort to put together an outfit, I don't remember that last time I wore all my make-up, jewelry is almost a joke, my hair... well I'm lucky if I even wash and dry it. These things aren't to be blamed on motherhood, because mothers can still look good. So what is it? Maybe it's that fact that I haven't been anywhere but hospitals or home for the last 14 months, maybe it's because of my physical state, maybe it's because it isn't important enough to me... maybe it's just me. It's not really fair to Jon the way I look now. Having a baby changed my body, but not the way it changes most. No stretch marks or belly fat, but sickness and severe weight loss. I weighed 135lbs the day before the c-section. I weighed 108 a few days later and have continued to lose. I pump every four hours... everyday, I change multiple diapers a day, I feed baby girl, I monitor baby girl. But that isn't the issue here, I'm not the only mom of a special needs baby recovering from a severely difficult pregnancy. I guess I have put myself on the back burner, not the good way of self sacrificing mom and wife, but the lazy just don't take care of myself because it's more work. I used to take going to church for granted, now I realize just how hard life can be without the constant spiritual uplift and fellowship with friends. My life has indeed changed, I feel a little lost sometimes. I am a mom but the truth is I am a heart mom and it makes a difference. We have the constant cloud of death lingering and limitations a broken heart brings. I have heard of the importance to have a support group of other heart moms and families, maybe it's still a hint of denial but I can't seem to submerse myself in the world of broken hearts because in that life is constant heartache and loss. It is a constant reminder that all of our children are fighting and many of them lose. Yet how could I possibly expect my other mommy friends to understand, they can imagine, but they haven't walked the path nor will they face it forever. I want Ella to have heart friends and healthy friends, I want her to feel normal and except who she is, I want her to know the risk without living in fear... I wonder if that is possible. I don't know what it's like to grow up with half a broken heart... I don't know what she will face... I don't know how to raise her. I just have to do my best raising her with love and a fear of the Lord. I feel like I am raising her blindly, maybe that's where mom's of older heart kids might come in handy... but I just don't want to have to ask a stranger how to raise my daughter, I am her momma, I should know. Ella and I are so different, she will have so many experiences I never had to face, so how will I know what to say to her. I wonder if every mom feels this way at one point or another regardless if their baby is healthy or not. I know God chose me to be her mom surely He will give me the wisdom to be there for her the way that she needs me. She has brought so much joy to my life I almost feel intimidated by her already, I feel like she is going to be a great woman for God full of love and she will far surpass me. Well just some thoughts floating around up in my head. I have been doing some soul searching lately I have a lot of work to do, I am just so humbled that God chose me to be Ella's mommy... I really hope I can live up to my calling.

Wednesday, December 29, 2010

LIFE- is going

Well my poor munchkin seems a little fussy today, especially for her. Maybe she misses her daddy since he went back to work today after being home so much over the Christmas holiday! Maybe it's because I think her tummy hurts. I don't know why she is, but it makes me sad. Trying to get Ella on a schedule has been fairly easy, but here lately she has decided to stop sleeping at night :p Letting her cry it out isn't exactly easy considering that I can't let her get too mad because of her heart. At the same time I am trying to keep her from becoming spoiled... well maybe a little spoiling is ok :) That girl has had two blow outs in one day... lots of laundry! Anyway life is going and even though it is hard, I sure do love it! :)

Monday, November 1, 2010

LIFE- can be heavy

So lately... well the last year life has been pretty heavy. It has been full of more extremes in that roller coaster called life than ever before. Sometimes I feel so much older than I really am, my body aches and the dark circle and bags under my eyes seem to get more obvious with each passing day. Sometimes I forget that I'm 22 not 60! I have been learning a very valuable lesson lately about cherishing every day, and every moment of life. All life should be celebrated daily. So much of my attention has been on Ella lately that their isn't much of a Jon and I anymore. I know when you become parents especially parents of a special needs baby life is all about that child for a while. Well for the first time in about a year while baby was taking a 4 hour nap, "Amy" went outside to play with "Jon". Yes life has made us officially mommy and daddy and we love it, but just every once in awhile we miss each other. We enjoyed the crisp fall air, played catch with the football, talked, ran, and LAUGHED! It felt amazing to be a couple without the weight of the world even for a short time! I hadn't realized how much I missed this man that I have been blessed to have in my life! I think I miss our once a week date nights, I'm sure they will be back once Ella is stable enough to have a babysitter, but in the mean time I am going to enjoy the rare stolen moments to be "us"! I wouldn't trade being a mommy for the way things were, but I needed to just have fun with the man I love and he is just as wonderful as he always was! Jon I'm so sorry life has "aged" me lately, such burdens I have been carrying. I look forward to being healthy and energized again, thank you for your patience with me as I lost so much of me physically during the pregnancy and emotionally this last few months. I promise to try my best to be the wife you deserve and someday find the balance between wife, and mommy! I love you forever, like you for always, you are my BEST friend!

Tuesday, October 5, 2010

LIFE-means so much more

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 and 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!

Wednesday, September 1, 2010

LIFE- is so amazing

This is my baby girl in the arms of the man I love... can life get any better than that? Yes Daddy is quite obviously her hero and I completely understand why :)