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

Great news!

What a roller coaster of emotions this journey has been so far. Just two days ago we thought baby Eli had a rare and possibly complicated heart defect in addition to the Down syndrome. Today we had an echocardiogram done to confirm this diagnosis. Although he does have a heart defect, it is not Tetralogy of Fallot as previously suspected. Upon further inspection of his heart through ultrasound by the cardiologist, we finally received some good news. He has a small hole in his heart, called a Ventricular Septal Defect (VSD). This is different than the hole we thought he had previously, which is an Atrial Ventricular Septal Defect (AVSD). She did not see any signs of the AVSD. She did see a possible muscular VSD as well but that will close on its own. If future echocardiograms show signs of Tetralogy of Fallot it will be a very mild case and not as serious as we thought earlier in the week. But, as of today’s echo, she is pretty confident we are only dealing with VSD. Obviously we would prefer Eli to not have any heart defects but as heart defects go this is the most common and “routine” to treat. It will require open heart surgery between 1 and 4 months of age to patch the hole. He’ll most likely have a hospital stay of 2 weeks to recover. He may spend a few days in the NICU at birth but that will be more for the Down syndrome, not the heart defect.

So today we rejoice in this good news. The last two days were filled with despair. Today is filled with optimism. Once again I am confident that everything will be ok.

Thank you for all of your prayers. Today God proved to me that they really ARE working!