Anna Grace's Story

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."

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 10days 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!

Our King Jesus has been ever present during this journey from beginning to present. There are too many answered prayers and wonderful miracles to talk about in this short-long story about our heart journey. The answered prayers and miracles we have witnessed have strengthened our faith in Christ and we are stronger today because of them. We are in debt to our friends and family in Christ who have been faithful to pray for us, and mainly for little Anna Grace. We believe the prayers have been answered for one main overarching purpose – to bring attention to the never ending, never ceasing, always expanding, earth shattering truth of God’ glorious grace, which is found only in the life of His son Jesus Christ. May all praise be directed to Him and may His name become more famous throughout the ends of the earth!

We are trying everyday to “count it all joy…when [we] meet trials of various kinds” James 1:2, because we believe and testify that Christ has overcome the world (sin, pain, heart disease and death).

John 16:33 Jesus says:

“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Thank you Jesus!

Heart Mom Night Out

Just a word about our Heart Moms Night Out last night..... AWESOME! There were 5 of us moms who ventured out into the frozen tundra to get together, meet, visit share our stories and begin building friendships that I am sure are going to last a lifetime! We decided that we will meet monthly... the first Friday of every month from 7-9 pm. So.... if you're interested in joining us in the future just mark the first Friday of every month on your calendar as your Heart Mom Night Out! Leave me a comment and I will get in touch with you about our location.

I will say that I was so blessed to have met these five Moms last night. They are AMAZING women with amazing strength, compassion, endurance and an enourmus amount of love for their kids. They each have uunique special stories to go along with their special heart babies.

I like my BLOG, e-mail and even Facebook too on occassion.... but NOTHING beats a face-to-face visit with a REAL hug!!! I am so thankful that I was able to go last night....

Heart Mom Night Out - Tonight!

With the crazy weather we've had recently I wasn't sure if we would be able to have our "Heart Mom Night Out" tonight, but I think the roads are fine so we are still ON for tonight. We're meeting from 7-9 pm. Leave me a comment if you want details about where and I'll get you that info.

See you there!

P.S - I can't wait to meet so many of you in person finally :)

P.S.S. - I think this is the second night out I've had in over a year (other than midle of the night trips to MUSC while Anna Grace was in PCICU). I am so thankful to be able to go OUT!!!!

SNOW!!!!

We got about 8 inches of now here last night so we have put the unpacking away for now to play in the snow. We even took Anna Grace out in it for about 15 minutes until her cheeks turned a nice pink color and it was time to go back inside. Zachary has perfected the art of making a snow angel and thinks that eating snow gives him more energy..... hmm...... not sure he needs any more of that! Maybe I need to eat a few pints of snow though! I was able to SQUUUUUEEEEZE into my old ski suit, which I haven't worn since a couple months before I got pregnant with Zachary. Nice that I could get it zipped, but it doesn't fit how it used to!!! (ha-ha)! All in all, we are having a great time enjoying the snow in our new home. I'll try to post some pictures later today. How fun!

CHD Awareness Week

We are moving tomorrow so my internet is being disconnected tomorrow not to be restored until sometime next week so I will be "unplugged" in the truest sense of the word starting tomorrow.

Before I go "off the grid" I want to share with you (in case you didn't knwow) that CHD Awareness week is coming up. It is February 7 - 14.... yep.... right smack dab in the middle of Valentine's Day. Please don't overlook this very important week... mark it on your calendar and I expect all my Facebook friends to post SOMETHING about CHD Awareness week on the facebook status that week. We HAVE to talk about CHDs... we have to make people aware of what it is.... what the statistics are..... how we can make things better for the children to come who are born with CHD.

Also, if you have a few moments, please go check out this post from a fellow heart Mom. She has some special stuff coming up for CHD awareness week which I think you will find interesting to read as well as informative. Click here to go to her BLOG.

Just an Update

So, I think I can finally post that we are moving into our new home. We have movers planning to come help us move on Friday so I have been very busy packing, sorting and purging. It has been crazy. Anna Grace has a Synagis injection on Thursday - other than that it is pack and move time. Please pray for our family during this transition - that it will be a smooth period of adjustment for the kids. I probably won't be blogging for a while during our transition, but after we get settled I'll be sure to post pictures.

January 4th - a One Year Anniversary

January 4 will be burned into my mind for the rest of my life I think. January 4th is the day that Anna Grace had her first open heart surgery, the Norwood. January 4th was the very first time that I was able to hold my daughter. Brian and I set our alarms (as if we even needed them... who could sleep). We got up at 3:00 am and arrived to the hospital about 4:00 am. We were in Bed 5 in the PCICU and it was quiet in the PCICU. We pulled up a chair alongside Anna Grace's little hospital bed and the nurses gingerly set her in my lap. You see, Anna Grace had so many lines running into her little body that holding her and disturbing those lines could be dangerous to Anna Grace, but a couple hours prior to such a big surgery the doctors allowed us to hold her knowing that if any lines were disturbed they could be run again in surgery. So, there we were, in the PCICU holding our daughter for the first time. Even though there were nurses, doctors and other patients all around us I don't remember any of that... only holding her. There were tears of joy streaming down my face pretty much the entire time I got to hold her that morning. Then of course it was Brian's turn and I beleive that was when he coined her nickname "Gracie-Poo". He started singing to her "Little Gracie-Poo... Little Gracei-Poo.... I Love You". He sang it over and over to her. I can vividly hear him singing softly to her with the sounds of her monitors beeping in the background. It was so sweet. To this day Brian rarely ever calls her Anna Grace, it's always Gracie.

Then the dreaded 6:00 hour arrived. That was when anesthesia was coming to take our baby away. Ugh..... I think one of the hardest things I have ever had to do was hand our newborn daughter over for open heart surgery. It is gut wrenching. You know you have to, but everything in you wants to grab your child and run. Ugh.... I really don't know how to describe it. Anguish. After they took her they gave us a beeper which the surgeon used to update us on Anna Grace's progress during the surgery.

Around noon Anna Grace was out of srugery and we met with her surgeon who told us everything went as expected. That is great news after such a serious surgery. We felt like we could breathe again... until we were told that the first 24-48 hours after this surgery are critical. So... it seemed that you breathe for just a second and then... hold your breathe again. What a day.... January 4th is a day I will never forget. I am so thankful for where we are today on this one year anniversary of Anna Grace's Norwood.