CHD Awareness Week: Anna Grace

Tina, mom to Anna Grace, shares her journey with us today. Anna Grace was born at MUSC less than 4 weeks after we were discharged to bring Chase home for the first time.

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Jeremiah 29:11 - For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

I was in the PCICU waiting room, overwhelmed and scared, on day-one after my daughter’s open heart surgery and in walks this very normal looking family with a normal looking little baby boy. It was at this moment that I met Chase and his parents for the first time. They were very friendly and shared with me their names and introduced me to their son Chase. They said he had HLHS and that he too had the Norwood surgery. They had been home from Charleston but were back just for the day for a follow-up swallow study. They were such an encouragement to me – seeing this very happy, sweet, normal looking baby boy quietly gave me hope for my daughter – that perhaps I too would be able to take her home with me one day. It was a brief visit, but it was the planting of a seed. It was just what I needed at that exact moment.

With that being said….. I’d like to back up and share with you how we arrived in Charleston at MUSC in the PCICU waiting room to begin with.

It was Friday, August 14, 2009. My husband and I went to the doctor’s office for our routine 20 week ultrasound. We were expecting our second child; we already had a little boy who was 2 years old and completely healthy. Like most expectant parents we were excited to be finding out at that ultrasound if we were going to be having another little boy or if we were going to be having a little girl.

During the routine ultrasound the technician confirmed that we were having a GIRL, but she had some trouble getting pictures of her whole heart. She said that our baby wouldn’t sit still or get in the right position for her to see the heart. She completed the ultrasound and we were then ushered to a regular exam room. The doctor looked at the ultrasound and had us go back into the ultrasound room for another try. Two technicians were now working to get better pictures of our baby’s heart. They never said to us that anything was wrong, but they didn’t have to. Finally they had everything they needed and again ushered us back into an exam room. I looked at my husband and finally voiced it, “Something is wrong”. My husband prayed this simple prayer while we waited for the doctor to return, “Lord, You are sovereign and Your hand is in complete control over all things, even this baby. Let us rest in You no matter how this turns out.” We waited about 5 more minutes and the doctor came back in and said this, “It does not look good, but it is something we can work with. I can not say for sure, but it looks like Hypoplastic Left Heart Syndrome. We are setting up an appointment with a specialist”.

That was a defining moment in our life. We were reeling and we left our appointment to go home and start doing research on this diagnosis that we had never heard of before. The internet is a scary place for statistics on this diagnosis. We of course were also still earnestly praying that the doctor was wrong and that when we saw the specialist it would have been just some terrible misunderstanding.

August 18, 2009. This was when we saw the maternal fetal specialist who gave us our daughter’s official diagnosis of Hypoplastic Right Heart Syndrome (not Hypoplastic Left Heart Syndrome as we were initially told). He scheduled us to meet with a pediatric cardiologist who would perform a fetal echo to obtain even more detailed information about her special heart. It was all so overwhelming. I think we were in shock.

In between this appointment and the next we named our daughter – Anna Grace. We had this overwhelming need to give her a name and it couldn’t wait. I can’t explain this NEED that I had to give her a name, but my husband and I both agreed that Anna Grace suited our daughter perfectly. The reason we felt it suited her is because Anna MEANS grace so…essentially she would be “Grace, Grace” – it was a double measure of Grace. We were new Christians, both being saved in 2007, and felt that the Lord had already given us so much grace just by saving us – we prayed He would bestow that same grace on our daughter so in naming her “grace, grace” we wanted to honor Jesus. Once she was named I began praying for her by name and having my friends and family pray for her by name as well. Also, by naming her, somehow I was beginning that bond with her and that should the Lord not allow her to live much past her birth that I and everyone else would know that I had a daughter… and her name was Anna Grace. From this point forward I always referred to her as Anna Grace, never as “the baby”.

A week later we met with the pediatric cardiologist who performed the fetal echo and gave us even more detailed information about our Anna Grace’s complex little heart. The detailed diagnosis: Tricuspid Atresia, Aortic Co-Arctation, Transposition of the Great Arteries, Atrial Septal Defect, Ventricular Septal Defect and Pulmonary Stenosis. Our daughter’s cardiologist told us that our daughter was “the rarest of the rare”.

The cardiologist told us that our local hospital would not be able to care for her and that we would need to travel 3 hours away, to MUSC in Charleston, SC to deliver her. That would also be where she would be having the three surgeries she needed to have a chance to survive with her heart defects. The surgeries our daughter would need: “the Norwood” at birth, then a second surgery called “the Glenn” at about 6 months of age and then a third surgery around age three called “the Fontan”. These are open heart surgeries… as in opening her chest completely, stopping her heart and putting her on heart/lung bypass to perform…. Very serious surgeries and no guarantees that she would survive. But, without the surgeries her condition is 100% fatal – usually within the first three days of life.

The other option was to not treat our daughter – this option is called the “comfort care” option. The doctors try to make your baby as comfortable as possible while in the hospital until her little body succumbs to her defect.

We really felt there was no option for our daughter other than to treat her by means of the three surgeries. So… we made plans to deliver our daughter in Charleston. On December 28, 2009 our daughter, Anna Grace was born at 3:48 am in Charleston, SC.

She underwent her first surgery, the Norwood, at seven days old. This was an excruciating day. It was also the very first day that we were able to hold our daughter. Because she had so many lines running into her little body prior to surgery it would have been too dangerous to hold her for fear of disturbing those lines. However, the doctors told us that if we came early before her surgery they would let us hold her for a couple hours and if the lines were disturbed they could be replaced during surgery. So, at 4:00 am on January 4, 2010 we sat in the PCICU holding our daughter for the first time. Crying over her, praying over hear, singing to her and begging God to spare her life. Those two hours flew by more quickly than any two hours have ever passed. At 6:00 am the anesthesia team came to get our daughter. We knew we had to let her go, but everything in me wanted to take her and run.

We were given a pager which we were told the doctors would use to update us on Anna Grace’s progress during the surgery. So we waited in the waiting room, we prayed, we paced and we watched the pager for any updates on our daughter. At about 2:00 pm the surgery was over and we met with her surgeon who told us that everything went as planned, there were no surprises during surgery. That was really great news. The surgeon then told us that the next 24-48 hours were critical. We were informed that because of the amount of swelling these babies endure with this particular surgery that it is standard practice to NOT CLOSE THEIR CHESTS after surgery for 72 hours to prevent any damage that the swelling might cause. (I think also it is to allow for quick access to the heart should any problems arise). The surgeon did his best to prepare us for how she would look when we saw her with her chest left open and only a small piece of “saran-wrap type” material being sewn over her little heart. Despite his best efforts to prepare us, it was shocking to see her for the first time, she didn’t look like our baby because of all the swelling and it was even more shocking to see her little chest OPEN – you could literally see her little heart. As a mother I remember thinking, “how is she ever going to survive this”. Amazingly, our daughter’s swelling dissipated at a miraculous rate and she was able to have her chest closed only 1 day post Norwood. This was really nothing short of a miracle.

The time in the hospital post Norwood was a whirlwind time….. emotional….but that word doesn’t even begin to scratch the surface. However, each day our daughter grew stronger and after 6 weeks in the hospital we were able to finally bring our baby girl home. What a joyous day… one that I wouldn’t even allow myself to dream about, but was finally here!

Once home, our little girl was really not very happy, she cried a lot, she had feeding problems and severe reflux. But – despite these obstacles, she grew and her overall health remained stable. However, (as expected) as each month passed, her Oxygen saturation levels did begin to steadily decline and by May her O2 sats were hovering in the high 60’s. It was time for her second open heart surgery – “the Glenn”. As much as I hated to do this yet again, I knew it was time – my little girl was visibly blue constantly now and I could tell that her little body really needed this surgery.

So, surgery number 2 was scheduled for June 24, 2010. Back to MUSC in Charleston. We trusted her surgeon, the doctors and nurses there – we knew them all by name this time. Even so…..it was even harder to hand her over for surgery than the time before. We had 6 months to know our daughter, bond with her…. It was so very difficult to hand her over to anesthesia.

She did amazingly well during her second open heart surgery – again, her surgeon said that everything went as expected. This time our stay at the hospital was only 10 days long. I consider that nothing short of a miracle. After ten days I brought my very PINK daughter home from the hospital for the second time and this time she truly started to thrive. She was happy now and started sitting up and then crawling and most recently walking… hitting all her milestone like a champ!

Today, Anna Grace is just a little over a year old and we live a relatively “normal” life. He O2 sats hover in the low 80’s now, she is still taking three daily medications and we are limiting her exposure to germs. She is nothing short of a miracle. I am thankful for her – she is a blessing and amazes me every day.

Post-Norwood

Post-Glenn

One Year Old!

You can follow Anna Grace's journey here.