This Little Heart of Mine

ETA: as of March 2021 teddy is 5.5 and his heart is doing great ❤️

This post contains pictures of an infant post-op, while not overly graphic, these photos may be difficult for some people to view.

Recently Jimmy Kimmel revealed his newborn son's heart condition. To most families this is a gut wrenching story that you can empathize with but is a distant concept.

Teddy, the largest baby in the NICU ... 5.13.15 @ VHC NICU

But to 1% of families, like ours (and a number of dear friends') with child born with a congenital heart defect, this story brought back flashes of our kiddos' struggles. Having a child who is sick is difficult in it's own right; having a child sick when they are first born is terrifying.

Teddy was born with multiple congenital heart defects (CHDs) and had open heart surgery at 2.5 months old. He is now 100% and should have no lasting ill effects. Zach and I are constantly reminded how very lucky we are to have Teddy as part of our lives. He is a sweet and spunky kid who has brought us tremendous joy.

In a strange twist of fate Teddy was very lucky. He was in the NICU at Virginia Hospital Center for 4 days after being born. The NICU is managed by Children's so this was our first introduction into the amazing care of the Children's staff. Teddy's team caught a murmur and combined with some other abnormal readings they thought was cause enough for a consult with a pediatric cardiologist.

The day that we found out Teddy had a CHD, he was 4 days old. That day runs through my head in both crystal clarity and a hazy fog.

Zach had gone to work for the first time since Teddy had been born so it was just me and Teddy. We had been discharged from the NICU to the pediatric ward, so I didn't have my "friends" (as they had become) on the NICU staff there with me either. The pediatric cardiologist, Dr. Hougen, came in to perform an echocardiogram on Teddy to check on the murmur. He told me that: (1) there are 100 different causes of murmurs, most of them innocuous; (2) many babies are born with a small hole in their upper chamber - a small Atrial Septal Defect - but closes once they are born; (3) it could be something that required more. As Dr. Hougen began his work, I sat next to him having no idea what was coming next.

When Dr. Hougen was done, he began to explain how a normal heart should work with the old blood pumping in, around, and then new oxygenated blood pumping out. He then said (with much more explanation, much like a really good professor, answering questions all the way) "it looks like Teddy has a large malaligned ventricular septal defect (VSD) and two smaller ASDs and will need surgery." The rest of the day and meeting with him are very hazy. I remember listening to Dr. Hougen and looking at my tiny baby but I honestly don't remember much that was said.

He explained that Teddy's main challenge was the VSD. Teddy's two smaller ASDs were posing secondary problems. A VSD is a hole in the ventricular (lower) wall of the heart. The hole allowed oxygenated and non-oxygenated blood to mix in and out into the lung causing the heart to become very inefficient and causing the cardio-pulmonary system to have to work much harder than it it should. Dr. Hougen told me that there was no doubt Teddy would need surgery to repair his heart.

Because of the strain on his system many more calories are required for the cardio-pulmonary system and are taken away from other functions. He was going to be a tired baby and probably would not gain much weight. We were to monitor his weight weekly and track his food consumption.

He told me surgery would take place between 3-6 months from now but maybe sooner if at any point Teddy stopped gaining weight or showed signs that his heart was under too much stress.

As he left the room and I called Zach at work, I watched my sleeping baby who, at that moment, looked just perfect.

HOME

Zach and I made the decision not to tell our families that Teddy was sick until closer to his surgery. We did this because we wanted them to be able to relish in having a grandson and nephew and enjoy him for the adorable baby that he was and not look at him and worry about him being sick. We wanted them to be happy and not stressed. It was the right decision for us, but I know it would not be the right decision for everyone.

Teddy was a sick little boy at home. He didn’t eat well or much. He slept a lot. He was very skinny and wasn’t gaining much weight. His feet were usually bluish purple. His heart was maxed out by just the simple things of breathing and taking in the world. He would sweat while eating, feeding him 2 ounces of food took just about a half hour.

Despite all of that he was still the cutest baby ever. He smiled and “danced.” He exhausted and thrilled us to pieces, just like an infant should.

SURGERY

ATTN: Post-op photos in this section

PRE-OPERATION

At 2 months old he started a cough (tell tale sign he was getting sicker) and had only gained 2.7 pounds since birth. Dr. Hougen ordered surgery on a Tuesday and it was scheduled for the coming Monday. As sense of relief flooded over me when the surgery was scheduled - it may sound strange but I knew Teddy was going in for an incredible operation but I knew he was going to be so much better afterwards. I had been waiting for that day for 2.5 months.

Zach and Teddy napping before pre-op x-rays

Within days we were scheduled for Teddy’s pre-op work. We spent a full day getting EKGs, ECGs, blood work, tests, tests, tests, and paperwork. The EKG and blood work were Teddy’s least favorite. The EKG required 12 leads stuck all over his chest, but he was so tiny they went down to his belly and almost to his back. Getting them off was unpleasant business.

The lab work was no fun either. No one likes getting blood drawn, but infants really don’t like it. Infants' moms like it even less. I made Zach go in alone with Teddy on our final blood work trip. Teddy’s heart may have been tired but he let us know he did not care for sticky things being stripped off of him or having vials of blood drawn.

This was also our first official meeting with Teddy’s surgical team. Nurses, a pediatric cardiac anesthesiologists, and a pediatric cardiac surgeon and many, many, more. They all left us with a sense of awe and humbled. These people are just beyond amazing, choosing a career in which I would crumble every day but they do it with such grace and depth of knowledge.

We were lucky to have Dr. Richard Jonas perform Teddy’s surgery. Dr. Jonas assured us that Teddy’s surgery while major was one of the more common open heart surgeries completed in the hospital and his team was well versed in the procedure. Teddy would be receiving full open heart surgery which would take 3-4 hours. He would be on a heart bypass machine for roughly 45 minutes. His surgical team was to going to place a patch over the VSD and close the ASDs with sutures . We were told to expect to be in the hospital for 5 days-a couple weeks depending on how he recovered.

July 27, 2015 arrived too quickly and on some levels not quickly enough. We were anxious but at the same time we had always been ready for this day and for Teddy to be better.

Within an hour of arriving at the Children’s surgical department Teddy was in his little gown and it was time to hand him off to his team. I started crying as we handed him over to the nurse. As she walked away I watched her cradle him and kiss him on the head as if he was her own. I was able to smile and feel comforted that he was being cared for by people who loved him, too.

POST OPERATION

Our case manager gave us a beeper which gave us updates on Teddy’s surgery throughout the morning. Zach and I sat at a coffee shop in the hospital and waited and waited. I somehow read a book. Zach kept checking the beeper. Teddy’s surgery went through without complication. Everything was exactly as planned and just after noon we were called back to speak with Dr. Jonas who told us we could see Teddy in the CICU shortly.

Teddy just hours post-op.  so much to take in.

Photos from left to right: (1) Teddy just hours after surgery in the CICU (2) Teddy post op, still intubated and some what sedated (3) Teddy post op after being extubated (4) The second day, finally able to hold him. Best. Day. Ever. (5) Sleeping little baby, and much better than mom and dad! (5) The awesome firetruck mobile x-ray! (6) Holding time again, I was so tired (7) Eating like a CHAMP!! (8) and napping after that food (9) first day in the Heart/Kidney unit after being discharged from CICU (10) Nice dress, kid (11) holding his own bottle, feeling so much better just a week after surgery

We were elated that Teddy was out of surgery but no amount of research or talking to nurses and doctors can prepare you for seeing your child after major surgery. Teddy was intubated, he had multiple IVs, he had leads attached everywhere, he had multiple monitors spitting out all sorts of information. It was almost all too much to take in initially.

Zach and I did notice, almost immediately, that he was pinker than he ever had been. His toes and fingers were pink and not purple. It was incredible that the surgery made such a difference so quickly. I don't think I had ever truly processed that he was not a pink, rosey, baby, until that moment. Right then it really hit me this surgery really changed his little life.

Teddy’s nurse, Nancy, guided us through his stay in the CICU. Nancy was amazing, soft and sweet with Teddy and a strong advocate for him with the doctors when it was needed. She explained exactly what was going on to me and Zach and let us in on the decision making process whenever she could.

Nancy was also strong with us. Making us go home for the night until she thought it was appropriate for us to stay, and making sure we ate and rested enough. She took care of us as much as she took care of Teddy!

Teddy handled recovery in the CICU without any major complications. He did not quite enjoy letting go of the morphine in exchange for Tylenol and Oxycodine and informed us of such. Before surgery Teddy was a quiet baby, he didn’t really have the energy to cry. He now could let us know, and know loudly.

His other issue was opioid induced constipation. The little guy was really backed up. One of our favorite doctors ordered what he called “the silver bullet” (glycerin suppositories) and that did the trick, almost too quickly!

Before surgery Teddy would take 1/2 hour to eat 2 ounces of formula, and he would be sweaty and fall asleep right after. The first time we fed him he gobbled down 2 ounces in under 10 minutes and wanted more! It was the most incredible thing we had ever experienced.

By the day we were discharged, Teddy had gained a full pound. This may not seem like a lot but that means he gained more after his surgery than he did in a month prior!

HOME AGAIN, WHOLE AGAIN

We were discharged from the hospital with remarkably minimal medications or instructions. Just Tylenol, some pain meds, some “silver bullets,” and Zantac (apparently we left the hospital with an old man).

Second day being home.  Happy, healthy, smiling!!  Relieved. — Second day being home. Happy, healthy, smiling!! Relieved.

Teddy was a changed baby. We thought he was happy before, well afterwards, he was even happier! And he had so much energy. I remember telling friends, it was like going into the hospital with a newborn and leaving with a 3 month old. I wasn’t sure what to do with this baby who cried and didn’t sleep all the time and ATE. He ate so much, and was gaining weight fast - one month after his discharge he had gained 2.5 pounds!

As time went on I worried about Teddy meeting his developmental milestones and he showed me who was boss by getting to each one and smashing them. He is still a string bean of a kid, skinny and taller, but he also loves to eat which even now warms my heart.

Teddy will always have a scar. It’s not small but it has faded over the past 1.5 years and I hope he wears it as a badge of honor. I tell him that it means his heart is unbreakable - and that it will help him get the girls :-) I'm a cool mom :-)

The number one question we get asked is “are there any lasting effects?” And the answer is, no. Teddy can do anything he wants to as he grows, except play rugby and football according to his cardiologist. But that is just because he wouldn’t want his grandsons playing them, nothing to do with his heart. Children with fully repaired VSD/ASD and many other CHDs go on to run track, climb mountains, teach, be scientists, anything they want to do.

Anyone who knows Teddy now knows he is not going to let anything stop him. He just goes and goes and goes. He is one lucky boy.

SPREAD THE LOVE

We owe our world to the many medical professionals who saved Teddy. From the doctors and nurses in the NICU who heard something and ordered the first round of tests, to Dr. Hougen who watched over Teddy (and Zach and me) weekly while he was an infant and after surgery up until now, even! And obviously the medical staff at Children's National Medical Center in DC. Each and every person we encountered along the way from the IV tech to the Charge Nurses to Dr. Jonas played an integral role in making sure Teddy is with us now.

It's not just Teddy though, these amazing people do this day in and day out for hundred and thousands of families year in and year out. There are children with broken bones and children with medical conditions that make Teddy's look like a walk in the park. The care children get at CNMC is second to none, in our humble opinion.

WE HEART CHILDREN'S (AND TEDDY)

Every October The Race for Every Child is held in DC and benefits Children's National Health System so that they can continue to give amazing care to all kids.

Family picture after the Race for Every Child 2016

We will be participating with for our team "I Heart Teddy" and would love to have you join us, running, walking, or just coming out for a day of fun! In addition to the 5k, there is a kids festival with bounce houses and face painting as well as a kids dash, too!

Anyone who signs up will receive an I Heart Teddy team tech t-shirt (even the kiddos!) as well as your race for every child t-shirt. We do not expect you to do any fundraising, just sign up, come out, have fun, and show your appreciation and support for Children's.

Registration is only $30.00 until June 15, 2017 so sign up early and save money!

Join us by following this link to our team page https://childrensnational.donordrive.com/team/racewithteddy or join by going to the Race for Every Child website and searching for team I Heart Teddy in the team search bar.

This is just one of the ways Zach and I can think of to thank the doctors and nurses and staff who saved our (now crazy toddler) boy AND also thank our friends and family who helped us get through such a trying time. We hope to see you out there!!