Weekend recap – a word from Joe

good morning. this weekend has been another roller coaster of emotions. otto was doing great, then not so great then great again. and each time my heart sinks and rises and sinks and rises. my tongue is about bit in half. it’s a bad habit when trying not to cry to literally bite your tongue. today i thought i would give everyone an update on what exactly the medical issue we are dealing with is. joe is actually quite amazing at relaying medical information. we make a pretty good team here. he is able to absorb and process and break down what the doctors are saying while all i hear is the high level version because in my head i’m just pleading with god that nothing is too bad and then joey fills me in later. i asked him to write a little post to update everyone because i’ve tried several times and the words just do not come out right. so without further rambling here is joe.

I’ve done it! I’ve reached the pinnacle of my life! I can imagine no greater accomplishment…First I have obtained the prestigious title of dad …and now I get a guest spot on Abby’s blog! What?!?!?! In a matter of three days. I have crested the summit. How can I ever top this? Abbys blog?!?! We better call Oprah. I can already picture it. She will be sitting on her couch with her legs crossed, leaning into the camera. “Well…it’s what we’ve all been waiting for… an exclusive look into the REAL Joe the Dream Killer! What are HIS dreams? What are HIS thoughts? Who is this man behind the Instagram photos? We all know him as Joe the Dream Killer, but, today, we will meet the real Joe…the Ansel Adams of Instagram, the Steven Spielberg of SnapChat, the infamous…Joe the Enchanter.”

So…what’s been happening in my life…well, in case you haven’t hear, we had a kid. Little Otto. He jumped into this world feet first weighing in at a whopping 8lbs 11 ozs. It didn’t take long for him to swing his first punch taking out mommy’s heart. Shortly after that…daddy fell too…then the grandparents, next the aunts and uncles…and now it’s all over. Y’all better watch out cause he’s coming for you! And trust me, he’s adorable…I can say from the bottom of my heart, I’m the proudest dad in the world.

It has been an adventure though. Here’s an update on his condition.

Otto has a congenital heart disease called AVSD (Atrioventricular Septal Defect). In short, Otto has a hole in the wall that separates the left side of his heart from the right. A normal heart has four chambers. Blood collects in the right atrium where it then flows into the right pumping chamber called the ventricle. This chamber pumps the blood through the pulmonary artery to the lungs where it gets oxygenated. The oxygen rich blood then flows to the left atrium where it collects and is sucked through the mitral valve into the left ventricle. From there, it gets pumped through the aorta to the rest of the body. Because of the hole in Otto’s heart, oxygen-rich blood leaks back to the right side where it gets pumped through the lungs again. This causes the heart to pump more than it needs to. If left untreated, Otto would eventual lead into congestive heart failure.

All things considered, this is a relatively common heart defect. 4 out of every 100 “heart babies” have a form of this condition. Otto’s is on the moderate side of the spectrum. The hole in his heart is larger than normal, but the shape of the heart is still proportionate. If all goes to plan, it will be fixed via a surgery between 3-6 months. The surgeon would like to wait at least 3 months so that the heart will develop and get stronger. He doesn’t want to go beyond 6 months because the heart is crucial for growth. Ultimately, the baby’s feeding patterns will determine the timing. If he slows down, then he’ll get the surgery sooner.

The other issue is that his mitral valve is leaking. This valve is supposed to prevent the blood from flowing backwards on the left side of the heart. Well, it’s not working how it should, so Otto’s heart needs to pump a little harder. The doctors are monitoring it. As of last night, they have him on medication which is suppose to help. He will be on this medication until surgery.

The other concern is that his aortic arch is narrower than it should be. This is the arch that pumps the blood through his entire body. When the baby is in the womb, it doesn’t need oxygen, so there is a bypass vessel called the PDA that connects the pulmonary artery to the aortic artery. This vessel begins to close within the first few days after birth. The doctors are watching how Otto’s smaller aorta reacts to the closing of the PDA. They are concerned that while the PDA is open, that it may act as a bypass vessel which may hide some of the symptoms of the small aorta. The doctors are performing another echostat tomorrow to get a better picture. If this goes well, the cardiologist should give the green light. Worst case, Otto will need immediate surgery to correct this. We are hopeful that this can all wait until his AVSD is corrected.

The most immediate concern is his feeding pattern. He’s currently eating a third of what he’s supposed to. They inserted a feeding tube today. They will continue to monitor this. A lot of babies have eating difficulties in their first few days of life. They simply want to monitor Otto for the next few days to ensure that these eating difficulties aren’t related to the heart. He needs to get on a normal feeding schedule before they will let him go home.

Overall, it’s been an adventure. The little guy is a fighter and we are staying positive, but, we covet everyone’s prayers as we continue down this journey.

Thanks again.

-the dream enchanter

Comments

  1. Linda Andersen says:

    Dr Joe!!! Explained very well! I continue to pray for sweet baby Otto every day.

  2. Cyndy Rosenberger says:

    Very well said Joey. Moment my moment is how I got thru cancer . If you get they this moment… then try the next moment … then the next and the next. At the end of the day, of you made it thru all the moments … it was a good day. Stay strong you guys.

  3. Diane Becker says:

    Praying for you! What a beautiful little boy!

  4. Kim Bassett says:

    Thank you for sharing; this must be the hardest thing you’ve both had to endure. Many prayers for you both, the dr.’s and sweet baby Otto. God is good and his mercy never ceases. xoxo

  5. Sue Klein says:

    Congratulations, “Joey” and Abby! What a precious gift God has given you!
    I would be glad to pray for little Otto!

    Blessings!
    Sue Klein

  6. Sue Spotts says:

    Love all the science in your explanation, Joe. Prayers for strength and healing.

  7. My dad had the same congenital heart defect…and they didn’t find it, or operate until he was 19. He is 66 now and still going strong. Prayers for your sweet baby Otto to amaze everyone with a quick recovery.

  8. Praying for all of you. Excellent explanation Joe. Also, might I say WOW Joe you’re very funny. Abby should give you a regular spot on her blog. Thank you both for sharing this journey with everyone.

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