Update

Right before leaving to go to the hospital-last picture as a family of 3!

I'm so sorry I haven't updated our poor little blog.    I'm going to do my best to give a quick little summary of the last month; weeks that feel like they sped by and stood still all at the same time....

Dylan Wilson Bowman arrived into this world bright and early on Saturday, June 16th at 1:49am naturally-yes, he came so fast there was no time for an epidural!  He weighed in at 5 pounds 15 ounces and was 19 inches long.  There was a team of 11 doctors and nurses in the room just for Dylan and they immediately began to work on him and whisk him off to the NICU where our Cardiologist was waiting to do an echo on his heart.  Upon scanning Dylan, it was immediately apparent that we would need open heart surgery to correct his narrowed aorta.

First picture with our new addition.

We found out on Monday, June 18th around lunch time that a case had been cancelled and Dylan would receive his surgery in about 3 hours (we were thankful that we had such short notice-less time to go through all the worrying and "what-ifs").  We met with our surgeon, Dr. Mettler, and anaesthesia to discuss all the risks and sign our releases to do the surgery.  As soon as the doctors left our room, Jeff and I both fell apart.  In the section of Dylan's heart that needed to be repaired, is an intersection of the heart, vocal cords, and a vessel that sends fat from the stomach to the upper body.  As Dr. Mettler said "the good Lord could have made it a little easier on us."  Indeed...

NICU

We spent the afternoon in prayer and waited for our hourly updates from our surgical nurse.  It was excruciating.  When Dr. Mettler emerged after surgery around 7 to discuss in detail how things went, and we got a good report, there weren't enough thank you's in the world for that man.  How can you ever express to someone how appreciative you are that they literally saved your child's life...someone who gave Dylan the opportunity to be a "normal" little boy and go on to do anything he wants in life...how do you ever say thank you to that?!?!  

NICU

Soon did we realize, up until now, this was the easy part.  When Jeff and I walked into the PC-ICU, to see Dylan after surgery, there are no words to describe the condition our child was in.  We had spent so much time focused on getting through surgery, we didn't realize the recovery would be the most intense and difficult part.  We spoke with Dylan's entire care team-his surgeon, his cardiologist, his critical care doctor, his nurse practitioner, his respiratory therapist, and his nurse.  Dylan was hooked up to more machines than you can even imagine exist.  Seeing the breathing tube, chest tube, and so many beeping machines....it's more than any person should ever have to see....

Intentionally, there are no pictures being posted from the PC-ICU

Luckily, Dylan only required about 30 hours in the PC-ICU before we were able to finish his recovery on the 7th floor in the Cardiac wing.  Getting to the 7th floor was the best feeling in the world...to anyone who is in the heart world, it means you are stable and close to going HOME!  On the 7th floor, we actually got to start participating in Dylan's care...and holding him, and snuggling with him, and loving on him.  Up until the 7th floor, we had only been allowed to hold Dylan once a day, and it was such a process with all the machines and wires and cords (spaghetti-as they're lovingly referred to), that we really tried to plan it to be able to hold him for an hour (that's about as long as we could get before he had to be stuck or tested or checked).  Having to touch your child through an incubator is not the way anyone expects to have to "bond" with their new baby. 

Ty meeting Dylan for the 1st time-the day before we left the hospital.

Gloriously, we were able to leave the 7th floor on Saturday, June 23rd, exactly one week after Dylan was born.  Oh, what a wonderful day!  There are no words for what it felt like to be able to leave with our baby.  Finally, he was ours!  All the mornings of waking up on the postpartum floor and hearing the babies cry in their mother's rooms beside us, and my heart aching began to vanish.  The visions of the child coding in a room across the hall from Dylan in the PC-ICU began vanishing.  The constant sound of machines beeping, began to vanish.  And although, I could ramble on and on about the difficult things we saw, I really want to convey that what we felt while we were there is so much more relevant.  Many times Jeff and I looked at each other and said, isn't it amazing how many people are praying for us right this second.  Prayers were felt, and we were blessed that every single person we encountered at Vanderbilt was an angel on earth.  Anyone who works at Vanderbilt from the janitors to the highest doctor, they are the most wonderful, compassionate, caring people you could ever hope to meet.  It is a very special calling to work there.

Leaving the hospital!

We are grateful and humbled by our experience.  After all the things we saw, you will always hear us say it could have been so much worse and we are so lucky.  Make no mistake our child had open heart surgery at 2 days old, and it was an incredibly difficult experience, an experience that even reflecting on still generates tears.  But, we met folks whose children were waiting on heart transplants and getting their second pace makers at 11 years old and kids who were surviving with half a heart....you will quickly find that if you think you have it bad, you have it so good.  If you ever need perspective, go sit on the 3rd floor in the children's hospital, that's the surgical waiting area....and I can promise you, you will gain perspective....

Brotherly love

Ok...as you can see, I could go on and on and on about what this experience was like.  But, I will end with how appreciative we are for the power of prayer.  People who knew us, didn't know us, or barely knew us, prayed diligently for Dylan.  We spent a week constantly wrapped in prayer and love, how can we ever thank each of you for reaching out to us, for giving of your time and love....we can only say that we have been touched and we will pay it forward.  Please keep Dylan in your prayers as we begin doing his follow up testing to make sure his heart is functioning correctly.  We send as much love as you've sent to us, right back to you all.

*Congenital heart defects are the #1 birth defect.  1 in every 100 children will be born with a heart defect.

Thankful

We are so humbled, so blessed, and so incredibly touched by all the love we have received since announcing Dylan's heart defect.  When we first received the news, I don't think Jeff or I could have hit a lower place....devastated only touches the surface of what we felt.  But as we have shared our news, we have realized the rawness and vulnerability of our situation has allowed us to see things in a different light and be immensely thankful.  Perhaps that seems odd, but just tonight we were talking about how lucky we were with this whole situation.  Are there moments or parts of this journey that totally suck?  Absolutely, but we have consciencely decided to be grateful for all the positives.

Many of you have asked how we are doing and here is the truest sense of explaining it all.

These are the things we have mourned:
1. There won't be those precious first moments of holding our baby boy and bonding with him. This has been especially hard on me, since I know how amazing those moments are from having Ty.
2. Ty will be unable to visit Dylan the whole time we are at Vanderbilt.  Unfortunately, all the floors Dylan will be on require a minimum age of 4 to visit.  So, we're sad that Ty won't meet his brother until he arrives home.

Could I name other things? Sure, but those are the things that have been the hardest to get over.

Now take a look at all the things we have to be thankful for:
1. I had a cord cyst that allowed me to be monitored by a specialist and he listened to the "little angel" on his shoulder that kept telling him something didn't seem right.
2. They found the defect before Dylan was born, and we didn't have to go down the scary road of him being rushed to Vandy blue and unsure of what was going on.
3. We have some of the best Pediatric Cardiologists in the world preparing for Dylan and ultimately working on him.
4.  He has a heart that has all 4 chambers, has a right and left side, it's positioned correctly in the chest, it's the proper size, and is working.
5. His defect only requires only 1 surgery and 10 days in the hospital.
6. We don't believe he will have a "worst case" co-arc and his long term prognosis is very good.
7. He is wrapped in so many prayers that we can only feel at peace.
8. An old college friend, Colleen, is a brave heart mom and has so graciously helped prepare us for this journey.

Could I keep going? Absolutely!  It's so easy once you get over the initial shock to realize how lucky we are....how thankful we are....that things could be so much worse.  Jeff and I have been through more doctor's appointments than seems possible, and if anything, they have made us so grateful.  If you think you have things bad, just go sit at Vanderbilt's Children Hospital, you will quickly realize how fortunate you are.  I am amazed and encouraged every time by the strength of parents and kids in the most challenging of circumstances.

I'll wrap up this crazy long post with how incredibly thankful we are for you...our dear family and friends.  As soon as we told our story, the outpouring of love and kindness shown to us has been overwhelming.  Cards, texts, emails, phone calls, visits....more than we could have imagined.  I never knew what small, simple acts of kindness meant until we were on the receiving end.  We look forward to paying all the love we have received forward. 

An old, dear friend, Crystal, sent us an amazing daily devotional book.  Somehow every day, it has exactly what we need to hear.  One of my favorite quotes is "Thank me (God) for each problem you encounter, and watch to see how I transform trials into blessings."

Please keep the prayers coming.  They are felt and appreciated more than you could know.  Lots of love to you all.  Baby Dylan will be here very soon, and we cannot wait to introduce him to such very special people.

XOXO,
Jeff, Beth, Ty, and Dylan

Dylan's Heart

Hi sweet family and friends,

Most of you know, I have had a very complicated pregnancy with Dylan. We learned at 20 weeks that I had a cyst on the umbilical cord. After learning of all the horrible things that could indicate, it turns out that cyst really hasn't effected Dylan. We have since learned that cyst was a blessing in disguise. I have been being monitored by a wonderful Perinatologist, Dr. DeRoshe (a high risk OB doctor who monitors fetal growth and development), and there has been some concern over Dyan's heart.

As it turns out, we met with the Pediatric Cardiology team on Tuesday at Vanderbilt and found that Dylan does have a congenital heart defect. His defect is "coarctation of the aorta". So, what does that mean?!?!? It means quiet simply part of Dylan's aorta narrows. The aorta is the major artery in the heart that pumps blood to the body (especially the lower body). Because of this narrowing, his little heart is having to pump extra hard. In the womb, this defect isn't as huge of a deal because there is a PDA valve that aids the heart. Once a child is born, this valve seals off. In Dylan's case, that would be detrimental.

So, again your probably asking, what does all that mean?!?!? Well, it means Dylan is now considered a high risk delivery and will be delivered at Vanderbilt. Immediately after his birth, an IV will be started and medicine injected to prevent the PDA valve from sealing off (we need this extra valve to help his little heart be able to pump without overworking itself) . They will take him to do an echo cardiogram and the team of Pediatric Cardiologists will assess how narrow the aorta is and how immediate a course of action needs to be taken.

Worst case-The aorta is blocked or interrupted, no chance without surgery...he would immediately go to surgery.

Middle Case-*This is the option they think Dylan will fall into*-The aorta is narrowed but not to a level of being completely blocked. He will be monitored through multiple pressure, flow, echo, and other tests to see how that narrowing affects the overall function of the heart. Additionally, if the narrowing is "middle of the road" they will turn down the medicine to the PDA valve to let it being closing off and see how the heart and body reacts.  At that point, surgery will be decided.

Best case-The aorta is narrowed but not enough to require surgical intervention. He will be monitored but released for additional follow up tests.

They have prepared us that Dylan will more likely need surgery than not need surgery. So, we are planning for that. We are anticipating Dylan will need a 10 day stay at Vanderbilt. They are in the process of figuring out when my labor will be induced, as we ideally need Dylan to come in the middle of the day when the entire team can assess him. We should know within 4 hours of his arrival what action is needed.

So, we are sharing this information in hopes that as many people as possible will please be in prayer for our little Dylan, his team of doctors and nurses, and us. As you can imagine this has been extremely difficult news to receive. Please know in advance that your continued prayers, kind words, and generous acts are greatly appreciated more than you know. We are busily taking care of things, so if you don't get a response, please know it isn't because we aren't immensely grateful. We are thankful for each of you, your love, and support. We understand everything happens for a reason, and we know God has very big plans for little Dylan.

We will use this blog as a source to provide updated information as we have it.  We will try to update it as quickly as possible but know trying to absorb all the information we are getting may take a bit. 

Lots of love,

Jeff, Beth, Ty and Dylan Bowman