Melanie Withers is a Heart Mom who wants to continue to share Blakely’s story, not only to keep her story alive but to help other Heart Parents who are facing similar battles.

If you are reading this, consider yourself privileged. Privileged to even hear the story of my sweet Blakely Elizabeth. She was feisty, she was loving, she was her mother’s whole world. She is all of these things, even in her death.

During my pregnancy with Blakely, around the time of the anatomy scan we were told that a fetal echo needed to be done because there was some extra fluid around her heart that they were seeing. The echo was scheduled a week or so later. And then they wanted it repeated. At this point (and even before) I just knew deep down in my soul that something was wrong. What could possibly be wrong with my baby? All I knew at this point was that I wanted answers. After the second echo we were told by the pediatric cardiologist that Blakely’s heart was PERFECT! That was such a relief to my ears. It made the pregnancy fly by knowing that nothing at all was wrong with our baby.

Fast forward to her birthday. I went in the night before to be monitored before my scheduled c-section. I didn’t sleep any that night. Doctors and nurses were in and out. But, finally, the time came – 8 a.m. The time that she would make her grand arrival. At 8:29 am on April 27^th 2016, Blakely Elizabeth Hopkins was born at Johnson City Medical Center in Johnson City, TN. Her dad was in the room and was able to hear her first cry as well! Such an exciting time, until you can feel the whole mood of the room shift. Instead of congratulating you, they are rushing around and whispering. You automatically know something is wrong. After repeatedly asking the doctors what was wrong, one of them finally responded with “We’re not sure. The NICU team is on their way to get her.” They brought her over for a few pictures before the team got there. I could see her chest rise and fall and her legs kicking around, so at that point I at least knew my daughter was alive.

Once Blakely was taken to the NICU, it was a few hours before even her dad could go and see her. Of course, they had to try and figure out what was going on, and that is all that mattered. Figuring out what in the world was happening to my perfect baby. Shortly thereafter, some doctors came to speak with us. They said they believe it to be something going on with her heart, that it could be Truncus Arteriosus, but they weren’t really for sure. They were going to consult with some other hospitals to figure it out. How could something be wrong with her heart when we were just told weeks before that Blakely’s heart was perfect? After what seemed like a lifetime, the Pediatric Cardiologist that told us that he had consulted with UVA and that Blakely had what is called Tetralogy of Fallot with Pulmonary Atresia. They would be sending her to UVA by jet once their NETS team arrived to get her. Once the doctor stepped out of the room, he took a phone call. It was UVA. My aunt was still outside of the room and heard him tell the doctors at UVA, “I missed it. I didn’t see it before but looking back I see it now.” How could he have told us that Blakely’s heart was perfect when in fact it wasn’t? At this point all that mattered was that my daughter was alive and doing fairly well. I knew she would be transported to UVA where they could hopefully give her the help she needed. We finally got to go upstairs and see Blakely. She was precious – the most beautiful baby you ever saw. Fiery red hair, perfect little fingers and toes. The NICU at JCMC doesn’t usually let underage siblings back to visit, but they made a special exception for Blakely’s sister.

The next few hours flew by. The NETS team from UVA arrived. They talked to us multiple times, trying their best to explain everything that was happening and what would happen on the flight. The flight was delayed for a few hours because of bad thunder and lightning storms. Blakely finally arrived at UVA Children’s Hospital at 3:17 a.m.

The following morning, we arrived at UVA. We had quite a drive as UVA is about 5 and ½ hours from our house. Nurses, doctors, RTs, NPs and multiple other people were coming in and out of our room the whole time. Trying to learn how to do the most basic things with our newborn was a struggle, with her finally being able to take her first bottle a victory. All of this was leading up for the big day: her surgery day. At just 8 days old, my little baby would have to undergo such a horrible but necessary surgery. The day of surgery she had her BT shunt placed by Dr. Gangemi and Dr. Roeser. It was such a long day but when Dr. Gangemi came out and told us how good she was doing, it was like the weight of the world was lifted off our shoulders. Even with it going perfect, he still said that she was the most critical patient the hospital had that night. That hospital stay was up and down as she had her really good moments and she had moments that would bring you to your knees. Even though her surgery went great, in my mind it was the worst thing that could happen to my perfect baby. But all in all, she recovered quite well.

As a couple months went by, life seemed to return to “normal” – going back to work, taking care of a newborn, trips to UVA every 3 weeks. But, we also now had the responsibility of what came with having a child with a BT shunt. Weight checks every day, weighing diapers, recording intake, and monitoring her oxygen level. At almost 5 months old, Blakely needed her second OHS, her full repair. That surgery went great as well. Dr. Gangemi, Dr. Roeser, and Dr. Stone worked nonstop for the 16 hours she was in surgery. But as with the other, this surgery went great. The few days following surgery, however, were a different story. I stayed by her side as much as I could. She had so many critical moments, mostly at night. Her lactic acid would rise, she would need more oxygen, and finally the talk of ECMO if she got any worse. Eventually, she got to the point that she could be extubated. On October 11^th, 2016, at 6:21 a.m. her dad called and said that Blaklely was getting worse and they were going to have to re-intubate her. The elevator couldn’t go fast enough. The people on it with me probably wondered what in the world was going on with me.

I made it to her room in 3 minutes from the time I got the call. At that point there were so many people in her room. Dr. Joey as we called him was doing chest compressions. She was in cardiac arrest. Dr. Joey would look at her, then look at me, he kept working though. He never gave up on our girl. For 60 minutes Blakely got chest compressions. Blakely’s PICU room would soon be turned into an OR. They opened her chest again to place the ECMO cannulas. Sam Loya, RN and Dr. Dean would make trips back and forth from her PICU room to the family room we were finally taken to. They made probably 20 trips a piece while the surgery was happening, just to keep us updated. The surgery was successful, and she was placed on ECMO. A blood gas was taken at some point and her lactic acid was 28. Her kidneys took a hit during all of it and she was in kidney failure. Her brain took a huge hit because, of course, she was without oxygen for so long. In the next couple of days, she would need a PD catheter placed so she could start dialysis. She was also soon diagnosed with severe HIE. After a 4-day ECMO run she was able to be taken off without any further problems.

The next couple of months were mostly good for her. Her kidneys recovered and she was able to stop dialysis. She needed to have a trach and g-tube placed but we were okay with that. Whatever she needed, that’s what we did. She celebrated her first Halloween in the hospital. With the help of her nurse, Dana, we dressed her up as a ladybug and Dana had a friend come paint her nails. She was perfect. We got to the point that we could hold Blakely again. Just a few weeks ago we didn’t know if she was going to live, much less us be able to hold her again. On December 19^th,2016, she was discharged from the hospital.

She spent Christmas at home. We learned EVERYTHING about our daughter. The good, the bad and the ugly. What to do when the “ugly” happened.  January 11^th, 2017, we made our way back to UVA for appointments. Two days’ worth of appointments was what was in store for us. But on the last day, Friday, January 13^th, I knew something was wrong. She was throwing up more and she was lethargic. Finally, at our last appointment the other doctors were able to see the change in her as well. The doctor called over from the Battle Building to the Hospital and the Pegasus Ground Critical Care came and got her and transported her by ambulance to the ER. Her glucose was unreadable on the machine, her oxygen wouldn’t pick up, and after two failed IO’s the PICU attending just wanted her on the PICU floor. He came down and escorted her himself with three of his nurses. It was touch and go. We heard from multiple people that they didn’t think Blakely would make it that night. But in true Blakely fashion, she didn’t go by the rulebook and made up her own. Every single time they would predict a way that things would go, it would go the opposite.

We also heard from a doctor that there was nothing else that could be done for her, that I should just put her in a long-term facility because I could not revolve my life around her. If you are reading this, NEVER say that to a parent. Never say that their life cannot be centered around their child, who probably IS their life. Needless to say, she never saw that doctor again. We got second opinions at the Children’s Hospital of Philadelphia and Boston Children’s Hospital. She had a pretty lengthy hospital stay. She was discharged on March 24^th,2017 – one day before her sister’s birthday. What a present McKenna got! Blakely got to celebrate her first birthday at home. We had a huge birthday party with all her favorites. I definitely went overboard but what else was I supposed to do when this day had been threatened so many times? I gave her the birthday party she deserved.

Day-to-day life with a medically complex kid is definitely not for the weak. Blakely was on multiple medications and got medicine 19 hours of the day. She got feeds multiple times a day and night. She was on a strict schedule of being turned every 2 hours. Some days we had nurses to help, sometimes we didn’t. If I have ever been strict with anything in my life, it was the care Blakely got. I had a huge whiteboard hung beside her bed with her medicine schedule. I had another one right beside of it with what I expected. Blakely never got a bath unless one of us was there. She got a bath, trach care, trach change, lotion, her hair dried, socks on, bib placed underneath her trach so it didn’t rub, and oral care. All of this happened most days, unless we felt she needed to rest. She got PT, OT, speech, and vision therapy once a week. She got moved to her activity chair and stood in her stander every day unless we felt she needed to rest. And by me saying she needed to rest, I mean she was having an off day and I could tell she wouldn’t tolerate it.

Life with Blakely was definitely very busy. And even with all of that, I still made sure she did things for fun. She went to the beach, she loved chocolate pudding, she played on a special needs baseball team for 2 years, she went to the fair, she went to Dollywood and rode rides, she would go out to eat with us, she would go grocery shopping with us, she went to visit family in other states, watched her sister play softball and was her biggest fan. She did everything a normal toddler would do. She made trips to UVA every three months with two full days’ worth of appointments every trip. Blakely eventually got approved by insurance to go to CHOP to see Dr. O’Connor. To our surprise, her heart actually started getting better. Heart failure was almost nonexistent. Dr. O’Connor said no doctor should ever tell you nothing can be done. It may not do any good, but something can always be done he said. I will never forget those words. Between CHOP, Joy, Dr. Dean, and all her other doctors from here to there, she was actually getting better. These people were helping my daughter not only survive but THRIVE!

Every now and then Blakely would get a UTI which landed her in the Nisewonger’s Children’s Hospital, the same hospital she was born in. Usually, it would clear up with IV antibiotics. In November of 2018 it was a little more serious. She would possibly need dialysis and had to be transferred to a hospital that could do that. Our local hospital called UVA and Nisewonger’s to see if they could take her. UVA was full and Nisewonger’s didn’t do pediatric dialysis. Along with UVA, ETSU Children’s and Vanderbilt were full as well. Brenner’s Children’s in North Carolina was the only one able to take her. Once we arrived down there (in an ice storm) they were able to take a closer look at Blakely. She didn’t quite need dialysis but her kidneys were definitely not in the shape they had been. We stayed there for probably three weeks or so but eventually got discharged. Going home this time, Blakely would need to be on a catheter every 4 hours along with all of her other care. When speaking to her doctors at UVA we were able to wean down all the way to just needing a catheter every 12 hours unless voiding on her own (which she did sometimes).

The summer of 2019 was spent in the hospital with Blakely some. She had two hospitalizations in about a month and a half, and was living her best life the rest of the season. We would go watch movies in town at dusk. She loved getting to snuggle with everyone and watching Spongebob in her bed. She loved to feel the wind blowing her hair and would always give us the biggest smile. Even with severe HIE Blakely had the biggest personality. You knew when she liked something and DEFINITELY knew when she didn’t. She would hear Dennis or I come into a room and her head would automatically turn towards us.  She was working towards weaning off the vent to hopefully decannulation. She was scheduled for her Make A Wish trip in November of 2019. Everything was going perfect. On August 9^th,2019, Blakely showed me signs of yet another infection. With her, signs of infection weren’t what they would normally be in another child. Her temperature would drop instead of rise. It would get as low as 92 degrees with a UTI. With her having a lower temperature and some other signs, I decided to take her to Nisewonger’s again because I just knew something was off. Call it a mother’s instinct.

We got there and got admitted once again, this trip her sister was with us. She got to see how everything goes for us and for Blakely when she gets admitted to the hospital. Once they started her on antibiotics her symptoms presented themselves a little bit more. Low blood pressure was also one of the symptoms she had once they started her on antibiotics, this was nothing new. To be honest, it was touch and go that night trying to keep her blood pressure up. The next day they decided to take her down to the OR to place a central line. Even that would be a struggle for them. She made it back up to her room and they decided to switch her over to use the new line. Seconds after the switch was made, she started to decline fast. Her blood pressure dropped, her heart rate was out of whack, and these horrible things were happening right in front of my eyes. They quickly made the switch back to the other line. Doctors, nurses, the pharmacy – everyone in the room was basically running a code. During that busy time I couldn’t help but ask if all of this was happening because of the central line? Did it fail? To my surprise the nurse that was doing everything replied with “Yes”. It took a little bit, but Blakely was holding her own with help of medicine. The rest of that day, night and the next morning I spent by Blakely’s bedside, watching numbers and kissing her sweet face, talking to her telling her that I know how strong she is and how much I loved her. Family was on their way to the hospital when Blakely started declining again. She was basically maxed out on every medication and they were going to start chest compressions.

Hold on. Previously I had stated Blakely was full code. I knew she was no longer eligible for ECMO, but they were to do everything in their power to save my daughter. I had told them to do everything unless I said otherwise. But how could I let my daughter, who had been through so much in her short three and a half years, go through more because of my selfish ways, because I wanted her here with me?

That is when I realized there was no more was to be done. I wanted my daughter in my arms so she would know in her last minutes just how loved she was. Chris, her nurse at the time, did exactly as I wanted. She gave me Blakely. I told her to unhook everything. No more ventilator, no more IV’s, no more monitors. Just a girl in her mother’s arms. At 1:37 p.m. on August 13^th,2019, my sweet Blakely Elizabeth passed away in my arms. No matter what happens that will always be the worst moment of my life. She went peacefully. No suffering. You would have never known that she wasn’t doing anything but sleeping.

Having a medically complex child, especially with heart and lung issues, you spend a great deal of your time watching your child breathe. Watching their chest rise and fall. For me, there was no more of that. It was the last time I would see my child take a breath. The next little bit is a blur. I remember holding her and talking to her. I remember crying and getting physically sick. I remember doctors and nurses checking on us, I remember Childlife taking my other daughter when she got there to explain things with her. I was there, holding McKenna, but to this day I can’t remember a thing they said. I was trying to be there with her, but my heart was 5 or 6 rooms away. I remember doing the hand molds of Blakely. I remember what blankets we kept on her and what stuffed animals she had. I remember Chris being there, telling me what a good mother I was and how she knew Blakely knew how much she was loved. Family came in and out and said their goodbyes. We gave her a bath, got her dressed, tucked her in bed and laid there with her until the funeral home came.

They say that it gets easier with time. I’m telling you right now the heartbreak I felt the day she died is the same heartbreak I feel today. It is a pain you can feel inside your bones, especially knowing that you are the mother who made that decision. And that’s something that I will have to live with for the rest of my life.

I have told you all so much stuff and it’s still not even close to everything. I’m sure I left out some things. I’ve probably forgotten to include specific details. Taking care of Blakely was not easy, and I’m not even going to pretend it was. Even when she was doing good, day-to-day life was a struggle. Meds, turning, bagging her when she had difficulty breathing, emergency trach change, g-tube changes, making sure we had everything we needed when we left the house with her, and seeing to it that she had the very best care possible. Sure, I could have left her in a long-term facility when she was six months old like the doctor told me to; but, that’s not who I am as a person. My daughter is my responsibility, no matter what. When you have a baby, you think that taking care of them is going to be sunshine and dirty diapers. You don’t realize that in the blink of an eye your baby could be trached and ventilated for the rest of their life. That they will have to depend on you for every single move they make and every bite they take. You go from birthday parties with all your mom friends to having very few friends because no one really understands what it’s like. As hard as it was, I would do it all over 15 times just for one more day with Blakely. I have said for a year that people will know Blakely even in her passing. They will learn from her. They will learn her story and they will learn not to take anything for granted. I am working with the American Heart Association in getting the Kids Heart Challenge in our local schools in honor of Blakely.

 

Kids who are medically complex and have special needs (and their parents) only want one thing: to be treated normal. They want friends, they want invited to birthday parties. They want Christmas at home and any other normal thing that comes along the way. Even if they are nonverbal, say “Hi”. Talk to them as you would talk to anyone else. Get to know them. Understand that it’s difficult on their parents too, even if they are holding it together really well.

Without Joy, Dr. Dean, Morgan, Yoshi, Chris, and all the other people that played a tremendous role in Blakely’s life, I don’t think she would have lived to be three and a half. Knowing that you have people you can count on, no matter what, makes all the difference. So, if you have the chance to work with medically complex kids and their parents, consider yourself lucky. They’re the cream of the crop!