I thought you might want an explanation as to what Madeline’s official “condition” is. This is long, but I’ll do my best to keep it to the point.
Madeline was born Magdalena Elizabeth on October, 4, 2001 (Magdalena is Spanish for Madeline.) She was born at 2 am after a 3 hour labor and natural, drug-free delivery. We went home from the hospital at 6 pm that same day.
During that night, she stopped eating, but kept spitting up. Because there was no food in her stomach, by morning she was spitting up bile. I took her to the doctor’s office while Adrian went to pick up his mom, Gloria, from the airport.
After an argument with a nurse, she agreed to go get the doctor, the same one who had checked her out at the hospital. He agreed with me that her breathing looked labored. He sent her for a chest X-Ray (which took an hour), then told me to pick up my husband then drive downtown to the third floor PICU of the hospital we had been checked out of.
Gloria held Madeline for about 5 minutes while Adrian and I grabbed some things, and we left for the hospital, 30 minutes away. On the way I had to remove her from her car seat and turn her on her tummy so she could spit the bile out, and by that time her chest was really caving in to breathe.
Adrian dropped us off and went to park. When I got off the elevators, there was a nurse waiting for us, as well as an echo cardiogram machine, technician and cardiologist. I laid Madeline down on the bed, and that is the last I held her for 2 months. I was straining to hear them, but had to sit in agony for 15 minutes watching the doctor and tech point and whisper. The Doctor stood up and ran out. I guess she thought twice, because she turned around and told us, “I’m sorry. Your daughter has several very serious heart conditions, it’s nothing you did or didn’t do, but I need to get my associate.”
Those are words you do not want to hear, but you never forget. Madeline started to crash, and my tears started to flow. She turned gray with splotches of color from her belly on up, and all of a sudden she was intubated, had multiple lines and drugs running in and out of her. We were told during the night to “make arrangements,” because the doctor, Dr Garabedian, was doing everything he could, but it might not be enough. By morning she was on peritoneal dialysis, and looked lifeless.
Now I had only had about 2 hours of sleep in the previous 60 hours, my eyes looked like a red raccoon because the tears that continually flowed, even when I was not “crying,” burned my skin. The surgeon, who was amazed we had even got her to the hospital alive, was confident that if we could make it to surgery, we had a shot. We were convinced we had the best possible team, led by the cardiologists, Drs. “G” and Burg, and the Pediatric Nephrologist, Dr Sundberg. The Peds Intensivists (Drs. Lee, Mellema, Graves, Brutaco and Frye) and nurses were great, for the most part, as we watched and waited for “liquid gold.” If Madeline’s kidneys wouldn’t start working, she was not going to survive.
At 8 days old, after about 4 drops of urine showed up in the catheter, her labs said they couldn’t wait, and Madeline went into surgery. She had been diagnosed with Truncus Arteriosus, an Interrupted Aortic Arch, an ASD and a VSD. (You’ll just have to Google that!) The amazing surgeon, Dr Siwek, had to make the false piece she needed after opening her up and looking inside her heart. He only had about 15 minutes before brain damage kicked in. (All blood flow was stopped and her body temperature cooled for this surgery.)
We left her at 7 am, and heard nothing until Dr Burg came in at 3:30, elated that her heart actually restarted! She remained in an induced coma because they left her chest open, under bandages, for a week, so the swelling wouldn’t kill her. They closed her chest up right in her room-turned-surgery-theater.
Madeline’s biggest problem now continued to be the unexplained drop in her sats (level of oxygen in her blood), as well as the arrhythmias she picked up. When she was 3 weeks old, she needed an antiarrythmic, but it sent her into a sat drop that lasted 6 hours. The Respiratory Therapist stood there bagging her for the whole time, oxygen on 100%. When the time came for the new drug to wear off, her sats came back up and that never happened again.
In the morning, however, we experienced another dip on the roller coaster we were on when she had 4 cardiac arrests that day. We again were told to make funeral arrangements. Somehow she made it through that week, the same week our friend’s 16 year-old daughter was hospitalized in the same PICU for a cardiac arrest due to her congenital heart defect. There were a couple of other very serious cases as well, and the “crash cart” (for “coding” patients) was not put back in it’s place for a week- it just went from room to room.
After about 6 weeks, we realized she might make it, but we would be there a while. Adrian quit his new job to be a stay-at-home dad of Hailey (6), Adrian (4) & Tristan (2) so I could be with Madeline in the hospital all day every day. It was at that time we realized that, due to the drugs they had to give her, she was accidentally paralyzed. It’s called Necrotizing Myopathy of Intensive Care (Google!), and is very rare, especially in infants. What that meant is that though her brain was sending signals, her nerves could not convey them, so she couldn’t move. She could initiate breaths, but her muscles could not fill her lungs. In fact, the only thing she could move were her eyeballs. That was encouraging to me though, because after weeks of sitting there talking to her and the doctors and nurses while she was in a coma, I knew she knew her Mommy because her eyes followed me (and me only) around the room.
At 3 months old, her kidneys started to work and she came off dialysis. She also got a tracheotomy, which meant she could be held much easier, and have a bath. Amazingly, in the “weightlesness” of the water, she could kick her legs. She also started jerking her arms. These were uphill days on the ride. However, she still had arrythmeas, the same kind that sent her into cardiac arrests on that cold, October Saturday. In fact, we couldn’t turn her, she was stuck on her back and right side, her heart couldn’t handle the pressure when she was on her left side. We finally found a drug that worked for her arrhythmias, and she got a G-J tube (that a few months later turned into a G- Tube).
Getting her home was another struggle. I had to fight to get her a ventilator because of her specialized needs. After many calls and letters, I ended up talking with the Vice President of the manufacturer of the rare, new type of machine she needed, and when she got involved, we were able to get everything set up. She went home 3 days before she turned 7 months old, and her first home nurse, Amber went with us.
Madeline was on a vent until she was 23 months old. She has had other types of surgeries, other heart surgeries, she no longer has arrhythmias but she is on anti-seizure meds now. Those started when she was four. She never got all her muscles back due to the atrophy that occurred while her nerves were healing.
So in summary, she still has a trach and a G-tube, can’t walk, can communicate some, like a toddler would and with poor pronunciation, and has no idea there is anything wrong with her. She is super happy and cooperative, and a joy to all those around her. That’s not to say she is not a lot of work, but once you know her, it’s easy work. (However, none of us like changing her diaper!)
One thing not “to the point” like I promised. The night of her cardiac arrests, I was sitting in a chair next to her incubator bed, and a charge nurse came in whom we had never met. She was doing a lot of fast talking to Adrian, and I was becoming very annoyed that he was just letting this conversation continue in the way it was headed. She finally made her point, which was to have us sign a DNR (Do Not Resuscitate) Form, when she said, “Even if you got her back, you wouldn’t want her.”
Well, I stood up like a mama bear, and had every bad word I knew flying around in my head. I was about to let this woman have it like I had never done before. However, when I opened up my mouth, this is what came out: “I don’t care if she can’t walk or she can’t talk, I’ll take her home and I’ll take care of her.”
I was totally confused. That is not what I had intended to say. I tried not to convey this thought with my eyes, as I was staring daggers at her. She quickly “needed to check on another patient,” and left me there shaking and furious. When she later came back in and realized I was so mad at her that I couldn’t even look at her or talk to her, other than a quick head jerk to her questions (she was feeling out the damage), I think she realized what she said was very wrong. When Adrian told Dr G in the morning what had happened, others besides me became furious, too. She was disciplined, but I still had to figure out what was wrong with me!
I realized that had I told this nurse off like I intended, my witness I had in the PICU would have fizzled to nothing. I realized that prophetically, the Lord had spoke through me, saving His witness of Light in that dark place despite the (righteous?) anger in my heart. .
Today, I look back fondly on the Sacred heart PICU, my home for at least 15 hours a day for 7 long months. I know much good came from Madeline’s time there, and I will ever be grateful that, even though she can’t walk and she can’t talk, we were able to take her home and take care of her.
An eternal “Thank you” to all the different people who took care of us when Madeline was in the PICU. We love you all. (DeAnna, Bridget, Kristy, Lynn, the Heidis, Jeanette, Jennifer, Bernard, et al- I apologize to all of you for the forced weight gain with all the candy we kept in her room for you! But you have to admit, it worked!)
Going home sign:
Drs. Lee & Brutaco:
Dr. Sundberg (applying a Harley Davidson tattoo to her arm!):
Holding Madeline for the first time in 8 weeks:
Nurse DeAnna, and our friends Gary & Marcia: