Wednesday, June 5, 2013

"Your son has a congenital Heart Defect & needs open heart surgery"

As a parent, this is the sentence you pray you'll never EVER EVER have to hear.

"Your son needs Emergency Open Heart Surgery today"

What?

This is what we lived through over the past week.

Our little boy, Tyler Andrew, was born on May 16th and discharged from the hospital last Sunday May 19th. He had some slight breathing issues in the hospital but was totally cleared by the hospital and our pediatrician to come home (his oxygen saturation levels tested fine). His coloring was a little dark with bad circulation (but not overwhelmingly so) on his feet & hands. They told us it's not uncommon for a newborn to look this way. He came home and ate & slept like any other newborn. He was doing rather well actually. I noticed some sporadic breathing but nothing out of the ordinary for a newborn.


Thursday (May 23, 2013)
I fed Tyler around 6pm and noticed he was having labored breathing. In hindsight, I now know he was struggling to eat that afternoon due to his rapid breathing. Let me back up for one second... our daughter Julianna was born with a pneumothorax (spent 6 days in the NICU, and it healed on it's own). We learned how to count 'breathes per minute' with her and learned what 'normal' respirations and 'not normal' respirations looked like.
Back to Tyler ...
I started counting his breathes... first time was 90 breathes per minute.... second time was higher... third time was high too. He was going anywhere between 90-110 breathes per minute. A normal newborn should be at about 30-60 breathes per minute. This went on for over an hour. I was holding him, and he looked right into my eyes and told me (with his look) something was very wrong. Mother's intuition. His breathing was very labored. Brian called the pediatrician, who told us to go to the Emergency Room right away. I stayed home with Julianna while Brian took Tyler to the ER. They admitted him to the NICU within a couple hours, and had taken an X-ray, bloodwork, and some other tests... and had him on Oxygen as well.
They wanted the cardiologist to take a look at him because they heard a slight murmur in his heart. Brian ended up driving home at 4am so he could get a couple hours of sleep, since the cardiologist wouldn't be there until later in the morning. For now, Tyler was breathing OK on the Oxygen.... and we both needed to sleep.


Friday  (The longest & worst day of our lives!)
(10am) We were getting ready to drive to Morristown hospital when the phone rang.
It was the cardiologist that examined Tyler earlier that morning. She told me my husband should probably get on speaker phone & here this too... I put her on speaker phone and she told us she had done an echo cardiogram and discovered Tyler has a congenital heart defect. She told us he needed to be transferred to Columbia Presbyterian Children's hospital (in New York City) immediately and needed to have emergency OPEN HEART SURGERY TODAY. Today as in a few hours. The transport was on their way to pick him up and she said we needed to drive to Morristown Hospital (where he was) to talk to her in depth and to sign papers, etc. Holy Shit. After she said the words "Open Heart Surgery", we went blank. Numb. We heard nothing she said.
We gathered up Julianna dropped her at daycare (Thank goodness Brian's parents had planned on coming to visit that weekend anyway, so once we called them, they immediately left their house to make the 3 hour drive to our house to pick up Julianna from daycare and stay at our house for the weekend with her!)
Brian and I drove to Morristown Hospital, in what would be the beginning of a few days of an extremely emotional roller coaster. We got there, spoke in depth with the cardiologist (thank God for Dr Prasad - she caught the "defect") and she explained what his condition was.

Tyler has what's called: "Infra-diaphragmatic Total Anomalous Pulmonary Venous Return with a partial ASD" defect. (also called TAPVR) Huh??
Of course we never heard of it, but we got a crash course on heart anatomy & this heart 'defect' in 10 minutes. This is a super rare defect, and not caught on pre-natal ultrasounds and is not caused by anything specific. No one knows how or why it happens and there is extensive genetic studies going on to try and find some genetic reason and/or cause. It's just the 'way he grew'. No one could have caught this ahead of time unless they knew to look for it, including our hospital that discharged him after he was born. Some Heart Defects are caught in utero, but his was not.
Basically, the right side of his heart didn't have a way to pump blood to the left side and his lungs were full of fluid, and most of his body was barely getting any blood circulated. That explained the heavy breathes and dark color of his skin. What saved him and actually let him live for a week was the fact his heart had a hole in it from birth (ASD) which normally closes up when a baby is born, and it allowed some blood to circulate back out. Most babies born with this heart defect usually go into surgery shortly after being born, because they are usually blue & not breathing well if at all. The other "lucky" thing is, he had all the right "plumbing", but they were just not connected where they should beor not connected at all. Had we not gotten him to the hospital the previous night, when he started to fail, this would have been a MUCH MUCH worse outcome.

He was brought to Columbia (45 minutes away), in a transport pod via ambulance, hooked up to many machines to keep him stable & breathing. For those of you that are not familiar, Columbia University Presbyterian Children's Hospital (Morgan Stanley Children's Hospital) is one of the best (children's) hospitals in the country with the best cardio-thoracic pediatric surgeons. This is where he needed to be. The transport picked him up, Brian and I were hysterical crying, we could barely function. We signed off on everything .... made some gut wrenching phone calls that we needed to make to family letting them know of this situation... and then drove to the city to NY Presbyterian (Morgan Stanley Children's Hospital). By the time we got there, they were already prepping him for surgery. We got to see him for a couple minutes before they brought him in. It was a completely unimaginable WHIRLWIND of emotions, doctors, nurses, coordinators, social workers, & other hospital staff... everyone was trying to make us comfortable and prepared for what was about to happen to our little 1 week old son.

OPEN HEART SURGERY TO REPAIR HIS HEART DEFECT. WORST DAY EVER.

One of the last things we did before surgery was meet with the incredible surgeon that was going to repair Tyler's tiny broken heart. God bless this man & his gifted hands. His name is Jonathan Chen. Here is his bio. (edit: As of 7/13, Dr Chen moved to Seattle and now is Chief of Pediatric Cardiovascular Surgery!)This surgeon is amazing - like some incredible doctor you see on a TV show or movie!

A very nice nurse named Trisha found us a room in the hospital to 'rest' in, so we could try and get some sleep, since we were going on 2 hours of sleep from the night before. We stayed there and dozed off for a bit. Brian and I crying & were holding onto each other for support, love, & praying to God above that our son would make it. The surgery took 4-5 hours (we lost track of time)... and then we woke up to Dr Chen knocking on the door to our room. I forget the actual conversation, because I was in a fog, but one of the first things he said was "Your son is a Rock Star" and "The surgery went perfect! No surprises!" ... and he went on to tell us he should make a full recovery and he was able to repair his heart back to the exact way it should be. He also told us he didn't see any reason that Tyler wouldn't be discharged in 5-7 days with a 'good' recovery. Five to seven days?? After open heart surgery on a 1 week old?! Holy Miracle!

The words "Open Heart Surgery" kept going through my head over & over. Like a bad dream, except I was awake. This kind of stuff doesn't happen to us, right? It's supposed to be someone else. We all think that until it happens to us. As a parent, you get by in survival mode when bad things happen... and you process the situation after the fact. We'll be processing for weeks & months to come.


Saturday
In the 12-24 hours after Tyler's surgery, he started his speedy & amazing recovery. Brian and I felt a little relief from the horror we were going through, knowing that Tyler made it through surgery and was on his way to recovery. He was left on sedatives for a good 24 hours (slowly waking up) to ease the pain. They then moved him to morphine.He had so many tubes, needles & lines sticking in him. It broke our heart and killed us to see him that way. No one wants to see their baby in this shape. We took a few pictures of him but will never be showing them to anyone... no one else needs to see that horrible stuff.
Brian and I decided to commute back and forth to the hospital daily since we only live about 45 minutes away (with no traffic). There were no housing options for this hospital, and it's pretty expensive to stay in a hotel in NYC. Julianna was at our house with Brian's parents, so it worked out that we at least got to go home at night and tuck her into bed.
Julianna's birthday party was supposed to be this afternoon, but obviously had to be canceled. I felt so bad for her because she was really looking forward to it. Instead, we went home and had cake with her & she opened her presents. It was the best we could do, and tried to remain positive around her.

Sunday
No more morphine. He was only being given Tylenol. That's it. Babies recover so fast and he was so mellow while laying there. If he was in pain, he would have let us or the nurses know. Oh - it's worth mentioning the nurses, doctors & staff of the hospital were simply fabulous. They were on top of everything & did a extraordinary job of explaining everything that was going on. We owe big thanks to so many staff there at Columbia that helped us and our little boy through this awfulness.

Monday
The "D" word- Discharge - was being discussed. No one would tell us for sure, but we were guessing Thursday or Friday discharge as long as he ate well. He was taken off the C-Pap machine, breathing beautifully on his own, and some heart tubes (and lines) were taken out of his chest by the cardiologist as well! This was totally (days!) sooner than expected. Rock star indeed. We also finally got to hold him now that the chest tubes were removed. There was NO better feeling than to hold my son and tell him everything would be alright. I knew then he would be just fine.

Tuesday
I think this was the morning he started taking formula (maybe overnight?). Since we were there all day, every day, we fed him and did everything else he needed (diaper change, temperature, holding him, etc). Since he had been eating before he went to the ER, he picked back up on formula immediately. This was one of the things that enabled him to recover so fast and be so strong during his stay there. A small feeding tube was put in him to help supplement his feedings if he couldn't keep something down. He seemed to be gagging on it when we fed him through the bottle and Brian asked the nurse to take it out. She took it out, and he fed much better. Done.

Wednesday
We fed Tyler during the day very successfully... and the talk was he was GOING HOME on Thursday. The next day. Rock star. We spent all day with him snuggling and holding him.

Thursday
We called the NICU before we drove in that morning. The nurse said he got the OK to go home today! Incredible! Our little boy was coming home today! Our precious little boy. The doctor even removed his steri-strips from his incision. It was healed up nicely - so amazing! Brian and I happily drove into the city (for the last time!) and brought our son home for good. The whole 6 days there was very surreal, especially not knowing his fate.

===========================================================

Thank goodness for technology. The whole time we were in the hospital, Brian and I were texting & emailing our friends/family to keep them updated on the situation. It was easier for us to do that then to call everyone with updates. We had so many people praying for little Tyler during this ordeal - there is something to be said about the power of prayer!

Tyler has been home now for several days and adjusting very well as if nothing ever happened. Our discharge instructions for Tyler were to treat him like a normal baby and just no tummy time for a few weeks. He has been the exceptional 'baby' roll model... and gets so many kisses, hugs and snuggles from mommy & daddy! We are working to get him into a routine... and he's sleeping/eating rather well just like his sister did!

There are more details to this week, and I'll be putting together another post with more info - but for now... this should be enough to fill your head and your heart. Everything happens for a reason, and this little boy was put on this earth to be with us forever. God bless Tyler and his tiny 'fixed' heart!



18 comments:

  1. Such heartache and then such joy. Thank you for posting this, Skye. Can't wait to see and hold my grandson.

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  2. Oh my goodness, what a story!! So glad everything went well. Thank God for mother's intuition. Congrats on your son, he's beautiful :)

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  3. Tyler is definitely a Miracle Baby!

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  4. Wow, I'm in tears reading this. I will be praying for all of you. My dad had heart surgery several years ago, I know how hard that was on us, I can't even imagine going through that with a newborn. He is your miracle baby for sure!!

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  5. Oh what a emotional experience. I'm SO glad to hear that Tyler made it thru surgery like a Rock Star!! and I'm glad to hear he is home with his wonderful family.

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  6. Wow. You are right--those words would be terrifying. It sounds like so many challenges and so many blessings in such a short time--I'm so glad he's healing right up! He looks like a rock star too--I love his little grin in that picture! Sending you hugs and prayers!

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    1. Hi Carla -
      It has taken me a long time to reply to my blog comments .... time is flying and I am not keeping up! Sheeesh!
      Thank you for the thoughtful words about Tyler - and we were blessed that everything did go well with the surgery and the outcome - best case scenario indeed! He was fixed 100% - thank goodness for modern medicine ... however, he will have a lifetime of cardiologist follow up and checkups... He is expected to have a normal childhood and normal life as any other child would! :)
      It really was a difficult time but it helped to reach out to our friends & family and get all the support and love from them... Words can't describe what we went through on the actual day of the surgery - it was totally surreal and like an out of body experience. We'll be scarred for life, but he won't have any memory luckily!

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  7. Wow Skye, this is tugging on my heart strings, tears are falling. I can't imagine having to go through this in the first days of his little life. I am so HAPPY to know that he did so well and is recovering so beautifully. You have all been in my thoughts and prayers I will will continue to hold little Tyler there. He is a little miracle... bless his heart.

    xoxo

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  8. I'm due this week, and can't imagine what you guys must have gone through! I'm so so glad to hear that your little Rock Star is a super healer and is doing so well! Babies really are amazing!!!

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  9. God is Good! Tyler is so blessed to have you as parents. We have been praying here for him! So happy to hear he is doing so well! He is beautiful!

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  10. GOD works wonders. GOD kept the hole in Tylers heart open. GOD placed the Cardiac Surgeon in Tylers path. I know that God has something special in store for Tyler. Grandpa and Grandma Fillmore can't wait to see Tyler, Julianna, Skye, and Brian this Friday. Love Grandpa and Grandma Fillmore.

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  11. What a miracle! I'm so glad this turned out to be a happy story and I'm sorry you had to live through a parent's worst nightmare. I hope life gets back to normal very quickly for you all. We will keep you guys all in our prayers. He is a beautiful boy.

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  12. I'm so glad I took a chance and stopped by to see if you posted anything new! I am in tears over here reading this post! I just kept crossing my fingers that the ending was good! I'm so happy to hear he is doing well and I can't even begin to imagine how you and your husband have been feeling over the past week! I'm so sorry that this happened and I agree that the power of prayer is quite strong. You just have to put faith in God that your son was brought to you for a reason; to spend many years together! I believe his fate is to be with you always and I will keep you and your family in my prayers ;o) Take care and if you ever need to talk you know how to reach me :o)

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  13. Tyler is beautiful. I'm so sorry you and your family went through this terrible ordeal. Thanks be to God! You and your family are in my prayers.

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  14. Skye, as a mom whose baby was in distress during her birth (she recovered, thank God), our family's heart went out to you and Brian for the ordeal you've both been through! Our whole family is relieved and joyful that Tyler is now back home, healthy and well. All of us families must support each other, after all. Here's to continuing good health for Tyler, as well as being lucky that you clearly have a great supportive family!

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  15. That baby is so beautiful it's hard to imagine the harrowing experience he went through -- and came out in the best way. Here's hopes for lots of fun and good health in his future years.

    I'm very impressed by his strong-looking little fingers and hands. They look like they'll be ready to play
    with everything in the not-so-distant future -- balls, etc.

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  16. Oh my, Skye! This must have been such a frightening ordeal! I'm so glad that talented and skillful doctors like Dr. Chen exist. Thank God Tyler came through the surgery with flying colors. He's a beautiful boy. I know he'll grow strong and be much loved. {{{Hugs}}

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  17. Awww I love it Tyler & Cole heart brothers born a day apart :)

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