Finally living life

A week ago I was handing my precious son over to strangers. Strangers that I had entrusted with his life. It was the most terrifying thing I have ever had to do. What is interesting though is what happened afterwards. A calmness came over me. Yes, physically I had handed Eli over to the nurses who would care for him during surgery. But spiritually, I had handed him over to God. This blog has been a spiritual journey for me. I have felt many emotions towards God. I have questioned my faith often. Yet, when I kissed my son as he lay in the arms of a stranger last Tuesday, I was filled with nothing but faith. Pure, genuine faith. I’ve come a long way.

Eli is doing wonderfully at home. He has so much more energy now that he’s not expelling it all on just breathing. He smiles constantly and has become quite the chatterbox. He loves to play and wiggle. Tomorrow he has a follow up appointment at the cardiologist. I am expecting nothing but great news.

It is kind of surreal to be home with Eli’s heart surgery behind us. We had fully prepared to be in the hospital for 3 weeks (we were told he’d most likely be there for 2-3 weeks). Back in August, we found out Eli did have a heart defect. At first, we thought the defect was much worse (Disillusioned – August 1, 2012). Thankfully, a few days later, the defect was confirmed to just be a VSD (Great News! – August 4, 2012). Although a hole in the heart was welcome news compared to what we thought the defect was, it is still very scary to know your baby will be born with a heart that is not 100% functional. We tried to educate ourselves as much as possible about what could happen and what was likely to happen. Eli presented with heart failure within a week of birth. That was scary. Our main goal became to help him gain weight so he could be at a healthy weight to have heart surgery. When gaining weight became too challenging for him (and for us!) we knew it was time to go forward with the surgery. At that point, everyone was exhausted. We never had the opportunity to just enjoy our baby. It was all about feeding him and checking his color and noting how many breaths per minute he was breathing. When we came home from the hospital on Saturday I half expected to see the ‘It’s a Boy!’ banners. I felt like we were just bringing our son home for the first time.

Every year, we will celebrate Eli’s birthday then three months later we’ll celebrate his ‘Heart Day’. We’ll celebrate the day he entered this world and then we’ll celebrate the day he got to live in this world. Our son is truly living now. You can hear it in his joyous cooing. You see it in the vigor in which he kicks his feet. Today, I may have even heard a little giggle. All along this journey I’ve said that Eli is teaching us about living life. Finally, we get to watch him do just that.

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Prayers and good thoughts please!

Today I come to you asking for prayers. Eli had his cardiology appointment today. At less than two weeks old they already see signs of heart failure. That sounds somewhat scarier than it actually is but it does mean his heart is working a lot harder than it should be. Especially when he eats. His cardiologist, Dr. Vernon, likened it to running a full sprint and trying to drink water at the same time. But, our little fighter gets through each feeding like a champ! Today she noticed his breathing was fast and deep. To buy us more time before open heart surgery, she has put him on Lasix. That should help keep the fluid off his lungs and help his heart to not have to work as hard. She has also increased his caloric intake by having us add extra formula to his feedings (both breast milk and formula feeds). After his second post birth echocardiogram, his VSD (hole in his heart) has shown to be “quite large”. Dr. Vernon suspects he also has a small ASD (hole in a different part of the heart) but it can’t be seen by the echo. She believes it is so small that it will only require a stitch to repair.

Having him go on medicine so soon has kind of knocked the wind out of our sails. We thought he was doing so good! On one hand, I’m happy he’ll get some relief and hopefully not have to work so hard to eat and breathe. On the other hand, once meds are started surgery becomes more imminent. I know he has to have the open heart surgery. I know he will be better after surgery. But I am scared to death to hand my precious baby boy over to strangers to cut open his chest and repair the main organ of life. I trust in the Lord. I know the surgeons that will handle our son’s surgery will be guided by His hands. But it still terrifies me. It once again seems like one step forward, two steps back.

So today, I ask for your prayers for sweet Eli. If you don’t pray, please send out a good thought on his behalf. Eli could use all the positive energy we can muster!

A former co-worker, now friend, offered to take newborn pictures of our sweet boy as a gift to us. Here’s a few that she took of our cute pumpkin:

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Can you stand the cuteness?!?

Thank you friends, family, and those of you who have embraced our family from afar. This journey is made a little easier because we know Eli has all of you in his corner.

xoxo Melanie