Deep Breaths…

And now I’m ready.

It seems like only yesterday I was telling everyone the great news that the Hounsel household would be adding a baby BOY to our growing family.  The excitement has dimmed considerably since then…please read the story I wrote for Baby Boy back in early November when we found out some devastating news.

The interwebz is amazing – it gives me access to awesomeness like Amazon.com, TMZ.com, FoodNetwork.com – and the like.  But, lately, I’ve been using the net to search for hope.  And, after lots of thinking and praying, I decided that I needed to share our story with everyone because I can only hope I can give someone else the reassurance that they are not alone.

I’ve thought, and prayed, and thought, and cried, and thought – over and over again – if I should share what’s happening in our life with the blogging world.  So much of me wanted to play make believe and pretend this wasn’t happening.  I was and sometimes am in denial.  But, with my due date quickly approaching, it was time I faced the cold, hard reality of our soon to be new normal.

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For the next few days, I’ll be sharing information on his condition (once I am able to gather more stats, pics, etc to help everyone better understand), lots of statistics, and sharing my soul.

I promise to be real – raw – and honest.  I need to know that if someone stumbles across my blog or if someone is searching for support – that the truth of this journey is as open and honest as possible.

 

His-story – written on 11/2/11

I took a deep breath as we drove up.  Craig pulled into the valet, put the car in park, squeezed my hand, and then we both got out of the car.

The valet guy greeted us with a smile.  And I smiled back…he didn’t need to know my heart was breaking inside.

The automatic doors opened, the cold air from inside hit me and the smell was haunting.

We were ran right into a “Welcome” booth fitted with all sorts of people from different nationalities.  The word “Welcome” written on the walls in languages and characters I had never seen. Ha – funny – “Welcome” was the last thing I felt.

We walked up to the guy at the Welcome booth and he too, greeted us with a smile and asked, “Do you have an appointment?”

Somehow, I found my voice and said, “Yes. Pediatric cardiology for a fetal echocardiogram.”

He asked us if either of us had experienced fever, coughing, colds, vomiting…

Craig and I shook our heads.  I was numb.  I was waiting for something to wake me up.  Because surely, this wasn’t happening.  This wasn’t real.

But, nothing.

We took our name tags and walked silently to the elevator.  I broke the silence, took Craig’s hand, looked at my best friend, and said, “I can’t believe this is happening to us – to our son.”

Craig – my hero, my rock, my support – looked at me and replied, “I know.  But, it will be ok.”

I almost believed him.  But, I could see in the eyes I’ve loved for over half my life, he was scared too.

 

Three weeks earlier…

“Well, Dad…it looks like you’re going to have a baseball watching buddy!  It’s a boy!”

The sonogram tech gave us the exciting news that we were getting a son.  Craig, although he said he’d be just as happy with a girl, could not hide his excitement.

Me, on the other hand, gave the obligatory smile and said, “Oh yay!  But, are you sure everything is ok?  The heart rate is low and I’m worried.”

The sonogram tech checked his heart rate and confirmed that it was low but not dangerous low.  She advised me to just monitor it with my heart monitor at home but to not be concerned.

Craig and I left.  His smile was permanently glued to his face.  He looked at me and said, “Come on!  You should be happy!  It’s a boy!”

Call it mother’s intuition or God’s voice – but I heard something and felt something in my heart – giving me a sign that something wasn’t right with my boy.

Unable to shake the feelings of doubt that all was well – I called a few days later and asked my OB to see me since I was worried. 

The office visit was normal to everyone but me.  I had a feeling that the doctor would find something.  While listening to the heart beat, I watched my OB’s eyes flicker with a look for concern.  He met my eyes and said, “I think we need to have you see a specialist to check on the baby’s low heart rate.”

Two days later, Craig and I were sitting in the Perinatlogist office.  A fetal specialist.

Craig – optimistic as usual – was expecting a regular visit and for them to send us home with news that all was well.

Me, however, knew something wasn’t right.

The sonogram tech began the level 2 sonogram.  Her silence and furrowed brow gave me confirmation that something was wrong.  The next thing I remember is her handing me a tissue….I had already started to cry.

I’ll never forget her words… “I’m so sorry.”

She finished the scan and told us to stay put and the doctors would come in shortly.

Craig…squeezed my hand…and said, “It will be ok.”

But, I knew better.

The doctors came in, whispering to each other and the sono tech.

I looked at Craig and started to panic.

He shrugged his shoulders and patted my arm.

One of the doctors finally spoke in audible tones.

“Did you take the quad test for Down Syndrome and Trisomy 18?”

It was Craig’s turn to look at me in panic.

I searched my mind and with a sigh of relief said, “Yes – my OB did one and he said that if they didn’t call me, to  not worry…and they never called me.”

The doctor spoke to his nurse and the other doctor, “Get me the actual results.  Call his office now.”

The urgency in his voice was evident.  The fear in mine and Craig’s hearts was growing.

After what felt like years but was really a minute or so, the doctor finally spoke again.  Words I will never, ever forget and words that every parent dreads.

“I’m so sorry.  But something is wrong with your baby.  I hate telling nice people like the both of you.  But we found a cleft lip and heart problem.  The heart isn’t forming right.”

All the wind was knocked out of me.  I couldn’t breathe.  I put my hands on my stomach, felt my son kick, and said over and over again in my head, “Why? Why my son?”

The next few moments were a blur of words I could not believe were being spoken to me.

“Heart not forming right.”
“Low heart beat.”

“Possible heart failure.”
“Combination of the cleft lip and heart….could be a lethal chromosome problem.”
“Not compatible with life.”

We decided to get an amnioscentesis to get the genetic map to see if it would answer some questions.  Worst case scenario – it would be a chromosome problem that was lethal and I may or may not carry to term and even if I did – we would get only moments with our son before we had to say goodbye.

Best case scenario – the heart problem and cleft lip and/palate could be anomalies and the heart may or may not be repairable…

Really?  Those were my options.

The next 4 days of waiting for the results were hell on Earth.  Truly.

I prayed.  I cried.  I yelled at God.  I searched and searched my mind for things I may have done to cause this. 

I held Craig while he cried.  I found strength as he grieved for the lost dreams of time with his son.  HIS son.

We got the results back…the report showed that we were clear of any of the very serious chromosomal abnormalities and our next step was to have the heart looked at closer by a pediatric cardiologist.

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We walked down the hall of Children’s Medical Center in Dallas.  We passed doors that had I only heard on my doctor shows and remember faintly from medical school.

Cardiocath lab.  Cardiothoracic Surgery Department.  And finally..

Cardiology Clinic.   I walked in and signed in.  Still numb.  I signed paperwork…but really…I’m not quite sure what I signed that day.

Craig was silent.  Trying to keep his mind occupied.  Trying to stay strong for me.

Finally – our name was called.  The woman greeted us with a smile and directed us to the echocardiogram room.

The sonogram tech was chatty.  A doctor doing her fellowship came in mid way through the procedure.

Her kind face was welcoming.  She greeted us. “Hi, I’m Dr. Dyer…Travis’s friend.  He told me all about you and I wanted to come in and sit in on your case.”

Travis is one of Craig’s best friends.  And when we first told our closest friends about what was happening, he told us about his friend that was a pediatric cardiologist.  A woman from college that was kind, compassionate, and a great doctor.

Dr. Dyer was all those things.  She made small talk with me during the hour long procedure.  But, I could hear her and the tech whispering things to one another and more words that I didn’t want to hear.

Finally, the physician who would be seeing me walked in.  She also greeted me with a smile and apologized for the wait.  The case before me was twins.

Whoa.  I prayed for that mother and father.  We had been dealing with the painful realization of having a baby with a heart condition…and they had to deal with two…

The doctor did her own measurements and took a closer look.  She asked me to get dressed and to meet them – both doctors – into the consultation room.

She sat Craig and I down.  I noticed there were tissues on the table.  I guess they had been accustomed to people crying in that room…

She asked me to tell me all about the baby.  Everything – she didn’t want any surprises.

I started from the beginning.  Giving her every detail that I could recount.  Reliving the nightmare.

Finally – she started to tell us about a normal functioning heart.

And then she started to write down a list of things that were not formed correctly and not functioning correctly in our baby’s heart.

The list was long.  The words were hauntingly familiar.  Words I studied in school – terms that were often followed by a “rare medical condition.”

Seriously?  This is happening.  This is really happening.  This lady is sitting in front of me –  telling me our child’s heart hasn’t formed as it should and now they are giving me a plan of action that will involve weeks or months in the NICU, open heart surgeries until he’s 4 years old, weekly to monthly doctor visits for the first few years of his life.

No way.  This isn’t real.

Craig finally spoke.  “So this is something that can be fixed?  This is something that you’ve seen?”

He was confident.  He was hopeful.

The cardiologist replied, “Yes.  We see this and we have patients  that follow up with us that are going to college.  There are a lot of risks.  There are possibilities of him having developmental problems, behavioral issues, and may require occupational and physical therapy.  But, yes, we have seen this and our cardiothoracic surgeon has repaired this problem before with success.”

Now it was my turn to speak through my tears…

“I just need you to say he will be alright.  I need you to say that my son will live.  I need you to give me hope.”

The cardiologist handed me a tissue and said, “We have a plan.  We will follow you closely the next few weeks until you deliver.  We will take measurements in a few weeks.  Do sonograms to make sure he’s not in heart failure.  We will have you meet with your new doctor who will deliver your baby, the surgeon who will do the procedure, the director of the I.C.U….we will do everything we can.  We will get you through this.  You need to stay positive, take care of you and your son…that’s all you can do.”

I looked at her, squeezed Craig’s hand, and said, “We will also pray.  And I won’t stop praying for healing or for a miracle.”

And we haven’t stopped praying…and we won’t.

 

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So here we are.  About 2 months to my due date – Christmas only a few weeks away.  And I’ve never prayed so hard in my life.  Never clung to God, to my faith, to my husband, to my family, to friends – to all those I hold dear – so desperately as I have the past few weeks.

I’ve never asked before – but I ask now.  Share this blog – share our story with everyone you know.  Anyone who is willing to pray for our son, for our daughter who is about to have her world change, for our marriage that is about to be tested, for doctors, surgeons and nurses that I will hand over my child to potentially save his life, for Craig and I – as parents who are now on living every parent’s worse nightmare – the possibility of losing a child, for strength, for understanding, for peace, for healing….

Prayer changes things.  God hears us. God hears you.  So please – pray. We are so grateful for each and every spoken and silent prayer.

Phillipians 4:6-7 “Do not be anxious about anything but in everything, through prayer, petition and thanksgiving present your request to God. And the peace of God will transcend all understanding and will guard your hearts and minds in Christ Jesus”.

 

 

Comments

  1. Wow, Czarina, this totally made me cry. It is heart wrenching to read every detail of you finding out about your precious boy’s diagnosis. We didn’t find out about Logan’s until he was two weeks old and those memories are still very fresh in my mind of our doctor uttering those words that something was with my baby’s heart.

    Keep praying. Never stop praying. I have seen miracles happen.

    I am here for you anytime you need me!

  2. Hello! I have been in your shoes and those first few days after our son’s HLHS diagnosis was pure hell. But through faith and a lot of prayer, our son is now 2 years old and is a completely typical toddler boy! We are so blessed! The road hasn’t been easy, but we’ve been so grateful that our son has been a hard core rock star and has fought through surgeries, caths and complications like a champ! He’s been through more in 2 years than most people see in a lifetime! Your post brings back so many memories of our experience of learning about our son’s special heart. While the path has been difficult, I wouldn’t trade it for the world! I’m so proud of our son, of what he’s accomplished, and mostly of the fact that he’s survived! God has been faithful to my family and we continue to praise Him for Chase’s health.

    Please don’t hesitate to check out my blog to read our story. You can look through the archives to see all God has brought us through. Chase was born on 10/26/09, had his Norwood on 11/2/09 and his Glenn on 3/3/10. We are expecting his Fontan to be in 2012. Our little chunk is already over 28 lbs. and they want him to be 33 lbs. for his last scheduled surgery!

    You and your family will be in my thoughts and prayers!

    ((Heart hugs!))

    • Check out the link in the post below–I’d love for you to meet my brother and sister-in-law. Their little boy also has HLHS.

  3. My son was born with Tetralogy of Fallot and a club foot. We learned of the foot first, and that was when my OB started throwing around Trisomy 18 and 13 and incompatible with life. We ruled those out with a level 2, but they didn’t catch his heart. It was only after I landed in the hospital with possible placental abruption that a perinatologist noticed something with his heart and sent us to the cardiologists. An amnio ruled out any disorders, his defects are just random. I had many of the same thoughts and feelings that you are working through right now. It’s hard and will no doubt test you and your relationships, but you’re doing the right thing. Cling. Cling to everyone. Cling to positivity. Cling to your faith. You’ve also got to accept the reality, but after you do, focus on the positive. You can get through this. Your marriage can survive. Your baby can thrive. I’d also encourage you to check out my much neglected blog. Henry, my son, had his full repair a little over a year ago (November 10th, most posts are filed under Henry or OHS). Maybe there will be something useful there.
    Keeping you in my thoughts!

  4. You are in our hearts, thoughts, and prayers.

  5. candice hankins says:

    Hi girl!! Im praying for yall!!!

  6. I’m so glad you blogged about your experience. It will help you more than you will ever know.

    I’m also in tears reading your post because it brings back so many memories. You will find the community of been-there heart families are amazing and so very supportive.

    We are all here for you and are Praying for your son.

  7. Jolee Burger says:

    Praying for this situation and for your peace. Miracles happen and doctors aren’t always right. Think peace and healing while you are carrying him, affirm his healing, eat good foods, know you are not alone. <3

  8. Hello! Let me just say that I want to jump through this screen and hug you right now! Reading this story was almost as if someone was retelling the story of my life. It took me a few tries, and many tissues, to get all the way through it, but I was finally able to get to the end. We have a three-year-old little boy with a multitude of heart anomolies, the most major being Hypoplastic Left Heart Syndrome. He was born 6 weeks premature (his premature arrival probably didn’t have anything to do with his heart defect) and was able to skip having Norwood. He had a bi-lateral bi-directional Glenn at 5 months and Fontan at 19 months. He is the most amazing child I have ever met and we thank God everyday for him. Our cardiologist and surgeon are at Cook’s and we LOVE them! They are all very special people to us. One thing that really helped my husband and I to cope with the news in the beginning was seeing real kids with the same condition who were still normal little kiddos! We are in the metroplex and would be more than happy to have you and your family meet our incredible little guy. I would also be more than happy to talk with you over the phone, through email, facebook…anything that will help to answer questions, calm your nerves, pray with, scream with!! Prayer has proven more than ever to be such a powerful thing during our journey. We are all praying for you and the arrival of that sweet baby. Hugs to you all!

  9. My heart goes out to you and your family! I saw the link to your blog through a post on facebook by my friend Janet Baker. I thought I’d send you some encouragement via my nephew’s story. As in the above post, Kellen also has HLHS, which was discovered the day he was born. He has undergone, I believe, 5 open heart surgeries, major complications and other procedures, but he is 6 years old and doing far better than anyone thought he would be. Please go to this website to read his story: http://www.carepages.com/carepages/KellenStrauser. When you sign in, his name is all one word, capital K, capital S. My sister-in-law and brother are in connection with so many wonderful families all over the globe with children with heart problems. Their testimony is truly amazing. I will join you in praying for your beautiful boy, your gift from God.

  10. I am so glad you shared your story and I will be following along as you prepare for your little man’s arrival. We have had a bumpy road, but I wouldn’t trade it for the world. Your post brought back so many memories and I thank you for sharing all of the details. Many heart hugs and prayers to you and your family.

  11. Meredith Cherry says:

    Oh Czarina, my heart is breaking for you. I had no idea you were pregnant, much less dealing with the hard news of a heart problem. As I read this story I couldn’t stop my tears from flowing. My son’s heart stopped beating at 28 weeks 5 days and I had him two days later exactly at 29 weeks. It was the most heart wrenching experience I have ever had to deal with. My situation is not quite the same, but I do know some of the emotions you are going through. Why me? What did I do? What could I have done differently? It took me a very long time to accept God’s plan for me, but healing does happen. The strength of my marriage and faith was tested and we have found great comfort in our Lord. I will pray for comfort, understanding and strength for you and Craig and I will pray for the health of your precious, innoncent baby boy. I am available anytime if you want to talk or write. I will continue to check in with you to see how you and baby boy are doing.

  12. I’m praying so hard for your sweet baby boy, for you, and your family. Wish I could give you a big hug right now!! I’m going to share your post with my friends and family. Thinking of y’all. <3

  13. iya lavides says:

    hey czarina! Will be praying for u and your family..will offer masses for your baby boy and for all of you..keep the faith! God bless.

  14. I,, too, have just cried reading your blog. Our baby girl was 10 weeks old before we found out she had a problem. Reading about your baby, hers was not as serious, but to us it was. I also went through the emotions that you’ve spoken of–what did I do wrong? why would God let this happen when I prayed for this baby daily? when I finally got a little girl, why did she have to be sick? God knew all about it! And He heard our prayers and answered them–she was six before the was given a clean bill of health–she’s 29 now!!! Healthy and beautiful!
    Also, our neighbor’s baby was born with a far more serious heart problem and underwent major surgery at 10 days old. He is now a bright, happy, smart little kindergartener–his parents and family also attribute his success to a God who loves us and answers prayer.
    I will be praying for you, Craig, the baby, and your family!!!
    God bless you richly and give you His peace!

  15. Czarina,

    I know nothing I say will probably help or make you feel better, but I feel for you and your heartache. I haven’t ever followed anything like this and probably before a few months ago wouldnt even bother reading. We just had our first child 4 months ago and he was 6 weeks early which led to 2 weeks in the NICU. The feeling I had during that time worrying if we would get a call that something happened or to find out that something was wrong with our child was something I wouldn’t wish on anyone. I can’t imagine how tough this is on you and sincerely hope for the best. Reading the comments people have left you are obviously a very loved and valued friend of many which I hope brings you comfort. My wife and I will pray for you and hope that it works out in the best way possible. Keep up your attitude and trust in God and you will be rewarded. Anyone who is a new parent can relate to what you are feeling and everyone is pulling for you. I’ll be thinking of you and Craig over your due date week and I hope you all are rewarded with a healthy baby to take home.

  16. Shelton Dunn says:

    I know you and I do not know each other that well but we both graduated from Duncanville H.S. in 98. I know Craig a little better by working at Tom Thumb with him way back when. I came across your blog through a post Betsy Rodela’s Facebook page and it touched my heart so I wanted to leave a comment.

    Like you I too have a son, a daughter, a loving spouse, and a faith in Jesus Christ. I can not even imagine what you two are going through with the medical condition your son has but I do want you to that I am as of now praying for you, Craig, your daughter and your son. I also truly believe prayer has healing power. The pastor of my church was diagnosed with a cancerous brain tumor two years ago and was given two years to live. Through prayer of many believers and God’s grace he is completely healed. Please remember that and these Bible verses when times seem too difficult.

    Phil. 4:13
    Joshua 1:19
    Psalm 138:3

  17. Rajen Narayan says:

    Czarina, you are in my thoughts and prayer to God to bless your fond baby grow into a healthy child.

    Love,

    Rajen

  18. You are in my prayers! I have one child with a heart condition and another with cleft lip/palate. My children have made me a better person! Lots of blessings and prayers your way!

  19. Hi, Czarina! Our daughter, Rebekah, was born with Truncus Arteriosus and DiGeorge Syndrome. She is 2 and 1/2 and is just 3 weeks post-surgery from her third open heart surgery. She had several other anomalies that the doctors were not aware of prior to her birth, but we are working through each issue and hope to give her the best future possible. I can tell you that although the journey looks daunting and impossible right now, God give grace and strength for each day, each complication and each blessing. I really enjoyed reading over your blog and seeing your strong faith in God. You will definitely be in our prayers. If you don’t mind, could I add your blog link to my daughter’s blog? We like to keep a listing of other heart buddies for our friends and family to pray for. Blessings!

    • Thanks for your encouragement! And I will pray for your daughter, Rebekah, to continue to thrive. Please feel free to add my blog to your blog list! Thanks so much for thinking of us!

  20. Czarina,
    I am with Holy Kombucha and we met your sister Chonnie along the way of our holykombucha adventures last year in Deep Ellum, and now you serve holyk also at Zen.
    Our hearts sincerely sincerely go out to you. I have a son who was born extremely early 28 weeks but only because I did bedrest as my body was trying to give birth to him at 24 weeks. I had agony and pain at first but he basically turned out perfectly normal after giving him a year or two to cope with his health issues and now his lingering mild/moderate asthmatic issues. But I did not go through what you are going through and won’t ever understand how heart broken you are and I sincerely sincerely am praying for you your husband and your son. I loved reading your blog and I felt like I was basically right there next to you and your husband. I really hope you and your husband find the strength to continue and always lean on each other for hope, strength and love.

    We hope to be there on 25th of February to support you and others in need like you.

  21. I love the story but it would be helpful to know what defect your son has with his heart.