The World is Your Oyster: Heart Hero Zella Pearl

written by Tammy Denberg, Zella Pearl’s mother

Our little miracle baby Zella Pearl was born on 11/20/15 weighing 8lbs 6oz.  She is our little miracle baby because first she is the only baby I have been able to carry to full term.  Lucas and I have battled with infertility for several years and at this point in our lives we just thought I would never be able to carry my own child.  We had been down just about every road you can take in the fertility journey.  Fertility meds, treatments, IUIs, egg donor transfers…you name it, we tried it and unfortunately the outcomes were never successful.  The doctors had finally recommended that we move on to either adoption or surrogacy.

Since we already had egg donor embryos, we decided to explore surrogacy first.  It was during that time when we were meeting with agency and coordinators that I felt a just little different – a bit more tired than usual and just not myself.  I just thought it may just be all the emotional exhaustion of our journey catching up with me….but maybe freat things happen when you’re not looking (expecting). Maybe it’s a miracle granted to you when you are truly ready? I don’t know, but it’s a blessing and awesome miracle nonetheless!  I was finally pregnant on my own.  It was such a surprise and such a wonderful miracle!  After all that time and all our disappointments we were actually going to have a baby!  We knew right then this baby was extra special.  The first trimester of course was so stressful, but every ultrasound and every milestone we passed through brought more and more hope that this time it would be successful.  By the 20th week it had finally sunk in that this pregnancy was the one we had always hoped for!  Because I had developed gestational diabetes and the baby was growing fast and was on the larger side, my doctor recommended a C-section and when that day finally came at 39 weeks – it went really fast and smooth.

Zella Pearl was born and she was perfect!  Seeing her chubby little cheeks and hearing her sweet cry for the first time was incredible….a true miracle for us.  Later that day, they were monitoring her blood sugar levels very closely because of the gestational diabetes, and once babies are born they should be able to slowly regulate themselves and when she failed to stabilize her levels on her own she was admitted into the NICU for further monitoring.  Immediately the doctor and nurses in the NICU told us that could not feel any pulse in her legs and they had also detected a severe heart murmur.  They ordered an immediate echocardiogram on her.

The cardiologist told us that night that Zella had three Congenital Heart Defects – Ventricular Septal Defect (VSD)Hypoplastic Aortic Arch with Coarctation and Bicuspid Aortic Valve.  All of these basically meant that she had a hole, a severely narrowed aortic arch which causes a reduced amount of blood carrying oxygen to the body, and then the most serious of all the defects – an abnormal aortic valve.  Zella only had two cusps in her valve and a normal aortic valve has three.  This can cause difficulty not being able to stop blood leaking back into the heart and pooling instead of going back into the body.  Hearing that word “defect” over and over again was of course devastating and incredibly scary and the happiest day of our lives quickly changed into our own personal nightmare.  Our sweet baby girl would have to endure an immediate very scary and painful surgery to save her life.

We were quickly transferred to the Rocky Mountain Hospital for Children where we met with Dr. Steve Leonard, the surgeon, who explained to us that he and his team would be performing the Ross procedure to repair the defects.  It was a very invasive procedure on such a small little baby, so we researched everything we could about that surgery and prepared that night for a very emotional day.  I do not think we slept at all.  The day of the surgery we met first thing with the surgeon again and Dr. Leonard told us that after some more thinking and praying that night he felt that a different procedure  – the Yasui procedure would actually be the procedure they would be performing instead.  The Yasui procedure would be less risky in the long run.  This procedure would reconstruct the aortic arch with a patch to allow the blood to flow through smoothly through the aorta.  It would also fix the cusp defect with a donor valve and it would reconstruct the right ventricle outflow tract with a valved homograft.

This was quite a scary last-minute change to comprehend!  It was a little uneasy that such a major surgery could so quickly be changed, but we knew that God would protect our daughter and be with the doctors during the surgery that day.  The surgical team all assured us that they all met early that morning to confirm that this Yasui procedure was the better option for Zella.  We watched helplessly as they took her into surgery and we just prayed and cried that she would be strong enough to survive the surgery.

The 7.5 hour procedure seemed like days and time literally stood still.  We had an amazing support system of family and friends with us at the hospital and in spirit.  When we were told she was taken off of the by-pass and was responding well, I just remember crying and thanking the Lord for looking after us and getting her through that day.  We just could not wait to see her and whisper in her ear that she did so well and that we were right there with her.  They finally brought her into the recovery room with all the tubes, medicine pumps, monitors and it was such an overwhelming sight.  This precious, helpless little girl had just been through so much.  She lay there so incredibly swollen and lifeless and her chest was completely still open with a very thin surgical sterile see-through bandage.  They kept her chest open to ensure no additional swelling would occur over the next few days as she healed, and with the see-through bandage we could actually see her little heart beating! – and what a beautiful sight that was!…. her little heart was the size of a walnut and the surgeon made the repairs to the valve structure by placing sutures in the valve leaflets to stabilize the valve structure.  He was sewing the valve with thread finer than human hair by hand….how incredible is that?!

We just prayed and prayed over her to have the strength to power through all this trauma.  Being able to look her in her eyes and communicate to her with our joyous tears was so important.

I felt like by just looking into each other’s eyes gave us both super strength that we desperately needed from each other. We knew if she could get through this we could get through anything together.

We spent the next month in the PICU while she recovered.  There were a few setbacks and obstacles to overcome while she was on the pacemaker and feeding tube, but slowly and surely, baby Zella improved and got stronger each day.  This little powerhouse girl just blew our minds with the strength she showed us.  We were able to finally bring her home right before Christmas and it was the best Christmas ever!  She was on oxygen and a special formula, but by the New Year she was off of both and growing as fast as she possibly could!  It took some time to really heal and recover and Zella continues to show us every day how strong she is.  She is such a little miracle baby not only by how she got here – but with what she had to endure in her first moments in this world.  Her smile is amazing and she is such a happy little girl.  We know that her life may not be easy as she grows with all of the pokes, prods, and additional surgeries she will have to have, but we know she will continue to be our little warrior and surprise us with her incredible strength!

If you look at her now you would never know what all she had went through during the couple months of her life.  She is so tough and such a happy little girl.

Her journey and scars show where she has been, but do not dictate where she will go!!!!  Zella’s Heart Hero Cape represents her strength, determination and courage to fight and overcome all the obstacles she has been faced with in her life so far…

Thank you for honoring our Miracle baby as Heart Hero of the Month.

Tammy and Lucas

Zella Pearl Sq FB grapic

Posted in: Advocacy, Awareness, CHD, Heart Hero of the Month, Heart Heroes

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