A healed heart

One day, back in May 2012, we found out Eli would be born with a heart defect. That news was heartbreaking (no pun intended). We have fretted over his heart for almost a year and a half. While I was still pregnant, we went to countless ultrasounds where we would stare at his heart and multiple echocardiograms where they would tell us what was wrong with it. He went into heart failure at 2 weeks old and had open heart surgery at just shy of 3 months old. Recently, it was noted that he had some elevated pulmonary pressure. Because of this, we met with the anesthesiologist to make sure he was even a candidate to undergo another surgery (for craniosynostosis). He suggested Eli have another echocardiogram closer to the surgery date (3 weeks away now – ugh) to see what happens to those pressures. Today, Eli had that echo. And the results were phenomenal! His cardiologist said his heart looks PERFECT. He is officially cleared for surgery and cardiology will not need to see him again for ONE YEAR! No more worrying about Eli’s heart.
It. Is. Healed.
Amen!

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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

Echocardiogram #2

Yesterday we had our second echocardiogram. Eli was less than cooperative. The pictures they were able to gather of his heart were not the greatest. But, from what Dr. Vernon, Eli’s cardiologist, could tell it still looks like we’re just dealing with a VSD (hole in his heart). She feels it is very small (4-6mm) and will not get any bigger. She even said that it may not require surgery to fix but that she was pretty sure it would. She certainly doesn’t want to give us false hope. She was just reiterating that it was that small. Because our little guy was uncooperative, she couldn’t really determine anything else. She said he might have an AV Canal defect but if he does it wouldn’t really change up the course of action in regards to surgery, recovery, etc.

We discussed the game plan from here on out. Once Eli’s born (hopefully on the planned date of 10/25 but our boy has certainly taught us to expect the unexpected!), someone from the cardiology team at Seattle Childrens will come to Overlake (the hospital we’re having him at) to perform an echocardiogram of his heart. Depending on what time he’s born, it will either be done that day or early the following day. Dr. Vernon is guessing we’ll probably be in the hospital for a few days longer than I was with Cody – babies with Down syndrome tend to have a more difficult time feeding and are prone to get jaundice. Her “guess” is that we’ll be there 4 days. She doesn’t foresee him needing to be in the NICU for anything to do with his heart. I hope this is truly the case. Obviously, it’s hard to predict what will, or even could, happen when he’s born.

I have been told by many that when you have a child with Down syndrome, you have to learn to go with the flow. Those that know me know that I’m definitely not a go with the flow kind of person. I’m a planner. I like schedules and lists. I like to know what to expect. This diagnosis has taught me that where I once thought I was in control, I actually am not. I am following someone else’s plan for my life. God knew His plans for me long before I did. I guess it’s time to go with the flow.

There once was a young girl, Gloria Strauss, who was stricken with cancer. Her story was chronicled by a Seattle Times newspaper journalist. I followed her story closely. She was filled with so much faith. She knew where she was going if she couldn’t beat cancer. She never wanted anyone to fear for her. She had no doubts what waited for her. Her story was truly inspirational. I’ve thought of her often while undergoing my own spiritual transformation along this new journey of ours. She never wavered in her faith. She always knew. Something she once said has stuck with me. ‘Let go and let God’. I think I should listen to the advice of a wise beyond her years 11 year old little girl. I need to ‘Let go and let God’. Gloria eventually lost her battle with cancer. She continues to teach and inspire in her death, much like she did in her life. Thank you for the reminder, Gloria. I will definitely LET GO AND LET GOD. My hands are up. I surrender. He is in control. I am just along for the ride. And if I know anything, I am guessing this ride will be the adventure of a lifetime.

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!

Disillusioned

Sometimes life just isn’t fair. After the tentative joy we felt after receiving some “good” news at the last ultrasound (the possibility that Eli had no heart defect) today we are feeling the exact opposite. We were told that Eli does have a small hole in his heart and something called Tetralogy of Fallot. As I do not completely understand what this defect is (yet) I have pulled some information from the Mayo Clinic website (www.mayoclinic.com):
The four abnormalities that make up the tetralogy of Fallot include:

Pulmonary valve stenosis: This is a narrowing of the pulmonary valve, the flap that separates the right ventricle of the heart from the pulmonary artery, the main blood vessel leading to the lungs. Constriction of the pulmonary valve reduces blood flow to the lungs. The narrowing may also affect the muscle beneath the pulmonary valve.

Ventricular septal defect: This is a hole in the wall that separates the two lower chambers (ventricles) of the heart. The hole allows deoxygenated blood in the right ventricle β€” blood that has circulated through the body and is en route to the lungs to replenish its oxygen supply β€” to flow into the left ventricle and mix with oxygenated blood fresh from the lungs. Blood from the left ventricle also flows back to the right ventricle in an inefficient manner. This ability for blood to flow through the ventricular septal defect dilutes the supply of oxygenated blood to the body and eventually can weaken the heart.

Overriding aorta:
Normally the aorta, the main artery leading out to the body, branches off the left ventricle. In tetralogy of Fallot, the aorta is shifted slightly to the right and lies directly above the ventricular septal defect. In this position the aorta receives blood from both the right and left ventricles, mixing the oxygen-poor blood from the right ventricle with the oxygen-rich blood from the left ventricle.

Right ventricular hypertrophy:
When the heart’s pumping action is overworked, it causes the muscular wall of the right ventricle to enlarge and thicken. Over time this may cause the heart to stiffen, become weak and eventually fail.

What does this all mean? Honestly, I’m not sure. This is still very, very new information that I’m trying to digest. Tomorrow I should get a call from the pediatric cardiology department at Children’s Hospital in Seattle to schedule an appointment. That appointment will focus on the echocardiogram (ultrasound of the heart) and should provide us with some answers as to what all this means. As it turns out, the cardiologist that our ultrasound doctor referred happens to be one of Chuck’s customers. Small world.

Our emotions are very raw today. We are once again asking, ‘why us?’, ‘why Eli?’. He didn’t do anything to deserve the challenges he’ll face in his young life. Either did we. My faith has wavered a bit again. I don’t understand why God doesn’t answer our prayers. I know He must have a different plan for us and baby Eli but, for once, I was hoping we’d be on the same page. I am angry. Our hearts have carried a heavy burden since this journey started. I sometimes wish we had a rewind button and could start all over. I’d also settle for the pause button. But, as we’ve been shown, life is not that easy. It’s not a horror movie. You can’t fast forward through the gory stuff. In real life you fight like hell to just get through it. And we will. Eli will. I know it. In this I do have faith.

The love and support we’ve received from family, friends, and strangers has been overwhelming and humbling. I am so very grateful to those that have prayed for us, thought about us, laughed with us, and cried with us. Thank you from the bottom of my heart for loving us and most of all, for loving Eli.
xoxo

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A brand new day

We went in for another level 2 ultrasound on Tuesday. Our little boy was very active. The doctor was impressed with his muscle tone and his strength. Everything looked great! Even his heart!!! Dr. Case did confide in us that at the 17 week scan he was quite concerned that what he suspected to be a heart defect (Atrioventricular Septal Defect, or AVSD) was going to be a large one. So we went in to the scan hoping for good news but expecting the worst. For once we received good news!!! The defect, if there even is one, is very small – so small in fact he’s not even sure if it’s there. We have another ultrasound scheduled for July 31, I’ll be almost 27 weeks then, to see if it’s actually there or not. If it is, or if it’s still inconclusive, we’ll get an echocardiogram of Eli’s heart done at Children’s Hospital in Seattle. I am so thankful for the wonderful doctors that are along this journey with us. They truly have our son, and our family, in their best interest. I can certainly feel the love.

If you asked me a month ago, I would’ve said I regretted finding out that Eli had Down syndrome prenatally. It took away the joy of the pregnancy. Instead it was filled with worry, grief, and anger. Today, I am happy to report, the joy is back! I love feeling my baby boy kick at me. I giggle when he has hiccups. I love hearing Cody tell people Mama has a baby in her belly. I no longer try to hide the fact that I’m pregnant by wearing baggy sweatshirts (thank goodness since summer has finally arrived in Seattle!). I proudly shop for maternity clothes and will talk about Eli to anyone who asks. I will talk about Eli. I may or may not talk about the Down syndrome. That is just a part of him. It is not all of him. He is my baby and I am so proud of him. So proud that his kicks are strong. So proud that he impressed the doctor. So proud to hear his strong heartbeat. I have a feeling this is only the beginning of things he does that make me proud. Today, I am one proud mommy of both my boys.

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