Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Saturday, February 9, 2013

Day 9: ELLIE and AIDEN

Today brings us the story of Ellie...a home birthed little girl whose mommy and daddy were told was a healthy baby girl, went undiagnosed for 3 days.  Today also brings us the story of Aiden...who was prenatally diagnosed with Double Outlet Right Ventricle and a large VSD.  Both stories bring us hope for the future of CHD kiddos!


Ellie was born, at home on January 30, 2012 sometime between 11:59pm and 12am. I got to pick her birthday since it was so close, and since I did all of the work on the 30th, her birthday was the 30th! We were told we had a healthy baby girl developing in my tummy so we went ahead with the home birth. I had a csection with my first daughter and was pretty mentally scarred from it. I wanted a VBAC so badly. And when I felt that I couldn’t get that with my OB, I found a very supportive midwife and birthed at home. It was an AMAZING experience. It was a LONG day. And it was the hardest thing I have done. I was in labor for 20 hours and I pushed for 3.5 hours. Ellie came out perfect. She was breathing, she nursed, I was mentally healed from my last birth and everything was just perfect.

Until we went to the pediatrician on Feb 3…

I was still on my birth high and was happy to show my new baby off. When the pedi came in and asked about her birth, I answered that she was born at home. He looked at me like I had done something wrong and asked if anyone was there with me. I explained that I had a Certified Nurse Midwife with me, so yes. He didn't like the idea of it… AT. ALL. He asked me why I had a home birth and I told him because I didn't want another c section  And he continued to try to make me feel like an irresponsible parent. He asked about her coloring while he was listening to her chest. I mentioned her race to him (white, Hawaiian, Portuguese, and Asian). He may have mentioned a murmur (which honestly didn't really mean anything to me) and he said she looked blue. I didn't see the blueness that he claimed and I thought he was just saying that because he didn't trust my midwife and was mad we had a home birth.

He asked the nurse for their pulse ox machine and clipped it on Ellie’s hand. The readings were in the 80s and 90s. He clipped it on her foot and it was in the high 70s. He told us that that wasn't good, but that his pulse ox was for a child, not a newborn. He wanted us to go to the ER just to get a pulse ox done on her. He said that it needed to be 93 and above. And I was like, “well, her hand was in the 80s, that’s close”. Seriously, I had no idea what it could mean. And he didn't bother to tell us either. He just told us to go get the test, that it was no big deal.

It would have been nice to have a heads up… considering the fact that he later told us that he knew it was probably her heart. I’m still angry about it.

Since the pedi didn't make the situation sound urgent, we packed Ellie up and went to get lunch at McDonalds. She nursed and was fine. We had to get my other daughter from my sister’s house as well. On the way to the hospital, I got a call from the pedi and they are YELLING at me, asking me WHY I wasn't at the hospital yet. So I told them I had to get my other daughter and take her somewhere else (to a friend’s house), so she would be close to the hospital. They weren't nice, but again… they didn't mention ANYTHING about her being seriously sick.

I drop my daughter off and we go to the ER. The pedi had mentioned that we would just get this ONE test (the pulse ox) done and nothing else… we didn't belong in the ER, but that is where they wanted us to go. We get back in a room and SIX people surround Ellie. They start trying to get an IV in her and I start crying. My husband spoke up. Nobody listened. The pedi at the hospital got there and wanted to see her on room air. The ER nurses weren't listening and were trying to put an oxygen mask on my screaming daughter’s face. My 4 day old daughter. My perfectly healthy VBAC baby. Her sats were in the 70s and 80s. The hospital pedi told us it could be something with her heart or circulation. They did a chest Xray and called Children’s National Medical Center. She came back and told us that Children’s wanted to see her. Ok. And she mentioned that a helicopter was on its way. WHAT?!?!?! Ok, so I can ride with her… we will be ok…. Actually, no. You can’t ride with her.


We were angry. My husband told them that we would just take Ellie and drive up to Children’s ourselves (it is a little over an hour from that hospital). It was ridiculous. They STILL didn't mention how serious this could be. I still have a HUGE problem with that. They convinced us not too and said the helicopter was almost there anyways. And she would be receiving Prostoglandin. I didn't even know why she was getting it. They probably explained, but I was preoccupied with the fact that they were going to take my baby away from me on a helicopter ride.

The transport team from Children’s got there and started to give her prostoglandin before they took her and FINALLY they explained that something serious could be wrong. We finally felt the urgency of the situation. My whole head was spinning. Everything had just been perfect…

The transport team leaves, with my brand new baby, and my husband and I carry an empty carseat out of the hospital. We went to get Abby (my other daughter) and we saw the helicopter take off. It was horrible.

We dropped my Abby off at home (my parents took care of her) and got a few things and booked it up to the hospital. I pumped in the car. I had no clue what I was doing, I had never pumped before.

We got a call from the transport team while we were driving and they reported that Ellie slept the whole ride and was fine. They were so sweet.

Then, as we were almost in DC, we got a call… I guess it was her cardiologist? She didn’t hesitate. She made sure I was Ellie’s mom and then said, “You daughter has a life threatening heart defect, Transposition of the Great Arteries, she will need surgery to fix it.”…………………………..

I felt like I couldn’t breathe, or hear, or speak, or see.

I had to have her repeat it… there was nothing wrong with my perfect VBAC baby.

She repeated it. I repeated it. And she proceeded to tell me that she had to have a cath procedure. They were prepping her for it now. And that they might start before we get there. We hung up and I lost it. LOST. IT. I could barely get the words out to my husband before I started sobbing. I couldn't believe my little baby had to have heart surgery!

We got a call a few minutes later from someone else… I think the person who was going to do the cath. He explained the whole procedure to me. Every step. And I said, “ok” at the appropriate times, but I have no clue what he said. I didn't even know what was wrong with her heart. I had never heard of that before. I didn't know anything about heart defects.

We got to Children’s in enough time to see her before her procedure. It was terrible to see her little body lying on a tiny hospital bed hooked up to all kinds of wires. I was in shock.

We went to talk to someone during her procedure and he explained, with pictures, what was wrong with her heart. He answered our millions of questions. They were all so kind and patient. I’m sure they are used to parents in shock and crying.

We got to see her after her procedure and it was horrible. I wanted to be back at home cuddling my newborn baby, just like everyone else gets to! But I couldn't,  I couldn't even hold her. I got to touch her and lean over on my tippy toes to kiss her. And we waited for her to be well enough to extubate, which she ended up doing herself the next day (she had the procedure done late Friday night). I kept pumping… and that was a learning curve of its own!

I hate pumping. But I LOVE nursing. So I had to. Luckily, I got to nurse her again the next day. And I nursed her up until her OHS. We were supposed to have the surgery a couple days after, but they had to keep pushing her back to schedule sicker babies in. It was frustrating, but we tried to see the good in that she was doing fabulously. She was pretty famous in the CICU. She was 8lb 12oz at birth. She was a big heart baby. And she didn’t lose much. She kept gaining the whole time in the hospital. She gave the nurses a run for their money.

The night before her surgery I cuddled her in the chair. I didn’t want to let go. I held her all night. I prayed all night. And I cried too. The morning of the surgery was horrible. I don’t want to ever have to do that again. She was hungry, but my husband held her and I cried in the back because I knew I could fix it, but I couldn’t. The nurses let me carry Ellie down to the Pre Op place. When we handed her over, I lost it. I couldn’t help but to think that I was just handing over my baby to be put to sleep, sliced open, ripped apart, have her heart STOPPED, and just HOPED that everything turned out ok. I didn’t like that the surgeon told us there was a chance of death.

I was still ready to wake up from this nightmare and have them tell me she was a perfectly healthy baby. But it never happened…

The day dragged on and I felt sick the whole day. We go reports every once in a while and she was doing great. We met with the surgeon and he told us she was bleeding more than they liked. He said they would give her a few minutes, but if it didn’t stop, they would have to leave her chest open. My heart sank. He was optimistic and I tried not to break down. I just prayed.

Luckily, she got her chest closed and we saw her a couple hours later. And seeing her… her swollen, pale body. It was hard to see. But she was alive. And over the next day, she looked like herself again. Even tried to extubate herself. J

Me, I was back to pumping… But I knew that I wanted to nurse her, so I did it. I made it clear that I wanted to nurse asap. And I kept asking. They never used the NG tube they put in her. The nurse decided to let her try a bottle (2 days after surgery) She took it. And had bottles for about 24 hours and then nursed. I was so happy.

One of the worst things was seeing Ellie in pain. She would straighten her arms and ball up her fists. She’d sick them in the air and just cry. It was horrible. I hated it.

We got moved to the HKU (Heart and Kidney Unit) and the pain got better. We thought we would go home a day or two later, but she wouldn’t come off of the oxygen. We didn’t get it. She was on the lowest amount possible (to where nurses thought it was funny) but when we took her off, she would desat. It was frustrating. We wanted to take our baby girl home.

Finally, we found out that she had fluid around her heart… that was causing some of the problems. There was talk about possibly having to go back to the CICU and get it drained. And I couldn’t help but be angry about it. I felt bad, but all of this was just really hard to handle.

She got better on her own. And finally we were able to wean her off of the oxygen. I could feel that we were going to get to go home soon! And on February 18, we got to bring our baby girl back home!

It wasn’t easy at first. She was REALLY fussy in the evenings. It was pretty miserable, but after a few weeks, she turned into a “normal” baby.

She is now 1 and about to celebrate her first Heartiversary on February 9th. She isn’t behind developmentally at all. She says words, almost walks, causes lots of trouble, and you would never know she was a heart baby unless you see the scar on her chest.

Her cardiologist appointments have been uneventful so far. We hope and pray that all continues to go smoothly and that we never have to do that again.

Looking back, it all seems like a horrible nightmare. I still remember it, but it doesn’t feel real. My eyes have been opened to the fact that anything can happen to anyone. It is still painful to think about. I’m still emotional when I tell our story. But I realize how lucky we are. The pulse ox saved her life.

Ellie is now 1 and you would never know she was so close to being gone. I looked in the notes from the hospital and when she got to Children’s, her sats were in the 60s. A few more hours or 1 more day, and she would not have made it. We are SO glad she is still here with us. She is the happiest baby. And, I plan to have more home births. 


Aiden's journey began at our routine 20 week anatomy scan. During our scan they found a very large hole in his heart. Many pictures were taken that day and our tears just rolled. We were so worried about our little boy. So after discussion of a fetal echo for better pictures, we were transferred to the Maternal Fetal Medicine group at Barnes and Aiden's team of doctors was at Childrens. After a full day of ultrasounds and fetal echoes, Aiden was diagnosed with Double outlet right ventricle with a very large VSD. We had fetal echoes and ultrasounds monthly to check his growth and note any changes to the heart but the best pictures would be after birth. 
  As we got closer to delivery, we were given tours of the NICU, CICU, and the OR (where I would be delivering) to try to prepare us for the big day. The staff, doctors, and nurses were all amazing and encouraging. A date was set at 39 weeks for induction to bring Aiden into this world in a very controlled environment. 30 hours later with help from an amazing nurse, on June 8th, at 3:12, my beautiful baby boy made his appearance lbs 2oz and 20.5 inches long and stable on room air. I was able to hold him for a couple minutes before the transport team took him to Childrens. Since he was in stable condition he was in the NICU for days until a bed opened in the CICU. 
  At a week old, Aiden had his first open heart surgery. He had a pulmonary artery band placed to decrease the pressure to the lungs and increase outflow to the rest of the body. The goal was to give him time to grow to see if we would be facing one or two more procedures. Aiden recovered very quickly after surgery but struggled to take his bottles. He would breath heavy making it difficult to eat and swallow. Poor little guy would just arch because of the uncomfortable feeling in his chest while eating. Aiden was sent home with an NG tube. On the way home from his cardio visit a week later, he pulled the tube out himself. After discussing with his doctors, we gave it a try again without the tube. Eating was very difficult still but we found if we relaxed him before eating, his breathing would steady and he was able to take the volume he needed to grow so the "bouncing" began. 8-10 times day, we would relax him by singing and swaying or we would dance to music (Coldplay and Wilco are his favorites) to relax before eating. 
 He was steadily growing on his curve and that's what we wanted. With regular visits, we monitored his growth and Oxygen levels. We knew surgery was nearing so Dr. Murphy decided it was time for a heart cath for better pictures of his heart and pressures of his lungs to decide on his surgical game plan. This was done on May 4th, and trying to keep Aiden sedated to keep his leg still was nearly impossible. He is pretty much on the go non stop. Aiden did amazing and after he was discussed among his doctors, they decided they wanted more pictures. A 3D echo and cardiac MRI was performed June 10th. He did great and his strength amazes me more every day. 
   After reviewing these pics, they decided the best approach for Aiden is two more procedures call the Glenn Bi-directional Shunt and the Fontan rather than the two-ventricle repair due to the location of the vessels to his large hole. It is too risky to do the two ventricle repair because it could interfere with the electrical component of his heart. Aiden had his Glenn on July 29th, 2011. We are getting ready for his third operation, this Spring or Summer. His Heart Cath and Cardiac MRI will be scheduled sometime in May. We will then discuss the Fontan or Two-Ventricle repair once again.  
  We wait for this date to approach not taking a day for-granted and enjoying every moment with Aiden until we have to hand him over and trust in God's Plan.
He truly is a joy. He is very happy and energetic and always has a smile for anyone he meets.

1 comment:

  1. Jackie, both of these stories are so inspiring, as is sweet Xavier's. It's amazing that these little warriors are so strong and resilient, and I love to hear of the success stories. That being said, there is still so much to be done to raise awareness and to make people understand that this is far more common than we realize. You are doing an incredible job of doing just that. Kudos to you for sharing your own experiences and for keeping the fire burning. Xavier, you and Nate are my heroes. Mousey