My Son’s Story Part 2

UPDATE: You can follow along with some recent updates on how my son is doing on my other blog.

All your responses from last week’s post touched and overwhelmed me so, that I almost don’t know where to begin this week.  Thank you all for sharing your hearts and stories with me!  This post contains pictures of my son after open heart surgery.  They may not be suitable for all audiences, so your discretion is advised.  I felt that the photos needed to be shared to tell the story, so I hope that you all don’t mind.

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My son was born in April, exactly one year after losing a previous baby.  Despite his heart condition, he was born strong and was able to come into this world without any medical intervention.  My labor was very long, and very hard.  There were some points that honestly, I felt like I was on death’s bed.  But I knew that my son had to enter this world without being affected by drugs or medication.  After 26 hours of intense labor, he came into the world and the medical staff  immediately whisked him away to make sure his heart was okay.

While checking him over, it was found that his rectum was closed.  I was unable to nurse him, because doctor’s had to ensure that his intestines were intact before any liquids could pass through his body.  He had IVs and a tube put down his throat to keep his stomach cleaned out, and was then taken by ambulance to Children’s Healthcare of Atlanta.  He passed a small newborn stool on the way over, so at least we knew that his intestines were intact.

Doctors diagnosed him with anal stenosis (where the rectum is partially or fully closed at birth), and our son would have to be dilated twice a day for the next four months.  Sorry if this is creating terrible mental images for some of you, but it is every bit as terrible as it sounds.  It was so hard on us, and him as well.  Four days after he was admitted to the hospital, we were able to leave.  Unfortunately, because of the separation, and the tubes that were placed down his throat, my son was not able to properly latch for nursing.  I pumped for 6 weeks until he finally latched on for the first time.

It was definitely clear to me by this time, that my son’s life was not going to be an easy one.  Fortunately, despite all medical complications, he was healthy and strong!  He developed like a normal baby until doctor’s noticed that he wasn’t growing anymore at six months of age.  This was directly related to his heart condition.  His heart was working so hard, that it couldn’t handle growing anymore.  So at eight months old, my son was admitted for open heart surgery.  I’m not going to sugar coat everything and tell you all that I had peace and faith throughout this entire time.  I would definitely being lying.  For the first time since I had found out that I was pregnant with him, I was afraid for my son’s life. I knew in my mind that he would be okay; I believed the Lord for this.  But my heart ached and I did feel fear.

The Night Before Surgery

The Night Before Surgery

I don’t think that anything can prepare you for the emotions you will feel when you hand your sleeping child over to the nurses so that they can take him to the operating room.  I remember looking at his little chest and thinking this would be the last time I would see it without a scar.  They were going to cut my baby open, and work on such a small and intricate body part.  My heart broke and ached for the struggles and pain ahead for my little Eli.  When he did make it through surgery, there would be the pain and recovery.

Moments After Surgery

Moments After Surgery

Through much prayer and support of family members, Eli and I both made it through his surgery.  As predicted by doctors, he had heart-block during surgery, and had to have a pacemaker implanted. Other than that, the surgery was a complete success! It was so painful seeing my baby with all those lines, tubes and of course the big scars on his chest. I wouldn’t be able to hold him and attempt to feed him for two more days.  I remember the first time he smiled after surgery. It was a few days after when our pastor came in, and Eli smiled at him. I felt so blessed and was so thankful to the Lord for bringing us through.  Just five days after open heart surgery, my son went home with us.

First Smile

First Smile

I am continually amazed by the strength of Eli’s little body!  He’s always been small because of his heart, but is surprisingly strong.  His weight and height have been below the growth charts until recently.  Six months ago the cardiologist told us to prepare for another surgery at the beginning of 2009.

We’ve been very prayerful these last months, and the doctors tried an experimental technique of how the pacemaker leads pulse the heart (my son still needs the pacemaker).  Last week we went to our cardiology appointment, half expecting to set a surgery date, and something amazing happened.  Our cardiologist was freaking out over the growth chart (they watch growth very carefully), and was asking the nurse to redo the entire chart to make sure there wasn’t a mistake.  Eli had gone from being below the growth chart (which he had been for almost his entire life), to being in the 10th percentile!! My son, who had always grown slowly and stayed below all the growth charts, had jumped up 2-3 levels.  I knew there was no mistake, and they confirmed that he had genuinely had a growth spike.

Next was the examination in the echo room.  After 20 minutes of silence from the doctor looking at Eli’s heart, he told us in amazement: “I can’t believe I’m saying this, but it actually looks better. I foresee us putting off surgery for at least another year.” If I was in tears over the weight jump, imagine me after hearing this!  “This kind of thing doesn’t happen”, the doctor explained.  He explained that it must be a result of how they changed the pacemaker three months ago. Whether it was a direct touch from God, or God working through the doctors’ hands, my son is doing better.  He still baffles the doctors with his energy.  People with this heart condition just don’t have his kind of energy and strength.  Although future surgery still lingers in the future, we have been blessed this day, and I believe in God’s power to heal.

Now

Now

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Surgery is a very scary thing, especially when it is your child.  I will be focusing my prayers this week on families that have or are going through risky surgeries with a family member (child or adult).  Please feel free to leave your prayer requests here in the comment section.  I would also love to hear any praises you may have!  Praises and testimonies of others are what encourage the rest of us to continue on in our faith.

Thank you all for reading about my son and I hope that you were blessed by his story!

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14 Comments:
  1. Thank you for sharing your story! My daughter who is almost two, had surgery 12-31-08. She had a nevus sebaceous removed by her left ear. I know the feeling of having your child taken away by the nurse and that feeling of helplessness. I am a nurse and fully understand the procedures before, but seeing my baby as a patient is something that I will never fully be able to explain. She was a trooper and did awesome, of course with the Lord’s help! With God, ALL things are possible. God has blessed you with a handsome boy! You, Eli and your family will remain in my prayers! God Bless you and your strength!

  2. Thank you for sharing your story of God’s blessings – I still have tears in my eyes looking at your beautiful boy. Eli is a miracle and his story reminds me that we are all miracles.

  3. Wow, that was an amazing story. I cried when I saw him attached to all those tubes. But our God is good, and has brought him thus far. God definitely has his hand on little Eli. <3

  4. Eli is such a beautiful boy! I am so happy that you can avoid another surgery for now. I know how hard it is to hand your baby over for a surgery. I have 5 children, several of which have special needs. My baby is 4 1/2 months old and has had several surgeries. He is unable to take any food by mouth, so he eats through a tube that goes into his intestines with a continuous 24 hour feed, another tube on the port goes to his tummy for his medicines. He has apnea spells still and also has some heart issues. He is on oxygen and a pulse ox anytime he sleeps since he is unable to keep his oxygen stats up during sleep. He also wears a heart/apnea monitor and recieves PT and OT and will be start speech therapy due to him not having any feeds by mouth. He hasn’t doubled his birth weight yet, so I understand not even being on the growth chart! I do know that through all of this that God has Blessed us with such a wonderful baby. He reminds me daily that He is in control and not me, and he has given me such a Peace through everything ( sure it hasn’t been a fast or easy road) and seeing your little Eli helps me know that through our trials, one day my son will be running around and getting into stuff. Your family will be in our prayers!

  5. That is such a very touching story. What a blessing that you can delay another surgery. I am truly blessed for you and will keep you and your family in my prayers.

    When I was pregnant with my daughter they told me her umbilibal cord had only two blood vessels (it’s supposed to have three). The doctor told me this could result in serious disorders and even death. My husband and I were in tears all the way home. Then we realized we needed to believe God would take care of our daughter. We continued to go for regular ultrasounds to make sure her organs were healthy, and in a few months she was born very healthy and very strong. She is four years old now and just as healthy as she could be.

    Then a few days after my son was born 18 months later, we were told to rush to the doctor because his hormones levels were way too high which means he had a condition that could result in his death at any minute and would severely impact the quality of his life forever. Again we had a moment of panic before remembering to turn to God for our strength. My son was retested and the hormone levels were back to completely normal. He is almost three now and has never had any more health problems.

    Both of these incidents were frightening for us, but it really helped us see that God is our provider in every way.

    I know your experiences with Eli are more serious that what I’ve dealt with, but I have no doubt that God has seen you through it so far and your trust in Him will continue to shine in the life of your son.

  6. Here are some prayer requests… If anyone is the prayerful type, I would appreciate prayers:

    For my aunt who has cancer spread throughout her body and is having surgery today. She has at most 2 – 3 months to live according to the doctors.

    For my 90+ year old grandfather, who is having back surgery today.

    Thank you to everyone for their prayers.

    $ Money Savin’ Momma $’s last blog post..Paid surveys update with proof of payment photos

  7. Your son’s story has truly touched my heart. He is truly a miracle baby. I am so happy for you that he is doing so well. Thank you for sharing your story.

  8. Crystal I can not even imagine how hard that was, God bless you for your strength and courage. Your son is so lucky to have a faith filled mother to lead him on this journey. I will keep your family in my prayers.

    Thrifty & Chic Mom’s last blog post..Giveaways Galore

  9. ((HUGS)) Mama!! So happy to hear about the surgery being delayed. I’ve been down the open heart surgery road with my DD, and I know how terrifying it can be. I prayed so hard for a miracle for my daughter. In spite of my faith I was terrified something would go wrong and I would lose her. I even told my sister that if that happened I didn’t know how I would go on.

    I am so grateful that her condition was fully correctable and you would never know that she needed the surgery.

    I’d like to send you some pics of Grace after her surgery, if that’s ok.

    Also, please pray for my mom. She was in the hospital last week. She just found out she has cancer of the uterus. They did a hysterectomy and she’s recovering nicely. Hopefully the cancer was contained.

  10. wow again you brought tears to my eye’s with Eli’s story. I have to say though that he is absolutely precious… his before surgery picture with those bright eyes is wonderful.. and then his now photo. I know how it is to have a small child. My almost 6 y/o girl (April 9th birthday) weighs a whopping 33 lbs. She has been hospitalized and had so many tests done… we only found out about 8 weeks ago that her DR thinks she has celiac disease.. now imagine telling someone her age that wheat (including breads and flour products), rye, barley, and oat products are now part of he can’t consume list… goodbye pizza, chicken tenders, cookies, cakes, etc… it has been an adjustment for us, but we are managing… I glutenate gorge myself about once a week as I am still trying to come to grips with her new diet and for the most part attempt to stay on it. When we started nearly 3 months ago she was 30 lbs and is not up to 33, so someone is on to something finally! I just wanted to say THRIFTYMAMA to keep your chin up and your hopes high, Eli will get through these hurdles! You are an amazing mom with amazing strength to share your personal story with us all!

  11. Thank you for sharing your story. I have 3 boys~one fairly new and although they have each been healthy (Thank you Jesus)~I had serious medical problems with the second which made me very afraid to have the third. God pulled me through as he did your family and Eli. Keep believing that Eli will stay healthy and no longer need any more surgeries. God makes the impossible~possible. God bless you and your family:)

  12. I am so glad you shared your story. My daughter is going to have open heart surgery this summer and I am already an emotional wreck. Your story was inspiring. As I try to prepare for this, I look for positive stories like yours to help me cope.

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