Monday, September 19, 2011

Our Little G's heart

 Mr. D and Little G

When my Little G was just 2 weeks old she ended up with a high fever and bacterial infection which put her in the hospital for a couple of days. We came home thinking all was well and had a Memorial Day celebration with  friends. Later, night I gave her a bath. It took longer than usual as, I tried to take the remaining stickers off her body from her visit at the hospital. Afterwards, I remember she remained clammy and her hands were like ice. I thought this was unusually, so I had her sleep next to me in bed. The next day, after taking the Littles off to school I  got Little G ready for her follow up appointment. This is a routine appointment after a hospital stay.
I packed her things, her hands still cold & sweat on her brow.  At the doctor's office she was weighed and measured, and while he was checking her abdomen I mentioned to the doctor that her hands were like ice since last night... I was thinking I was being paranoid  because it seems so many other things seemed unusual about my little one..
He took her heart rate and immediately scooped her up, hit a button and  called for 911. I was so confused.
They put her on ice...I tried to call my Mr. D - no cell phone at this time. I called his father. I needed someone to meet me at the hospital. The ambulance came and I held her limp grey body on my lap in the back of the ambulance. What was happening?was all I could think. My little one looked awful. I didn't think she was going to make it.  Little G's heart rate was 320 bpm and her body was beginning to shut down.  The took her to the NICU (neonatal intensive care unit). A social worker met up with Mr. D and I...this was odd as they took our baby, we wanted to be with her. We were astonished that we were taken away from our newest Little to fill out paperwork and possibly be counseled?  Someone came and told us "they were trying to do everything they could", just like in a bad movie. We were in a daze I think.  Then they decided to do a vagal maneuver that isn't that common and slapped her with ice between the poor BABY!
But, that did it, that made her heart start to slow down and slowly she began doing better.  That night as my baby was sleeping in a plastic container, I slept in what felt like a container too. A metal chair in an 8by8 room  full of monitors with a glass wall that separated us from all the other newborns. They usually don't put discharged babies back in the nursery or NICU. But, this was there only accommodations for us. We had to scrub in whenever we came. Darren and I changing of the guards sort of speak. We had to dress in scrubs to go in the room and only one person at a time. After 2 days of being in the NICU they finally found her stable enough to move to another floor. Finally, we were relieved,  but we did not have many answers. They said she had a SVT episode, which stands for  Supra ventrical Tachycardia, but didn't know what the cause was and they said she may or may not ever have one again. The also checked out a few other things that might be a problem.
She also had an area close to her rectum that looked like a little pocket in the skin to rule, this was to rule out spinabifda. They ran tests & MRI's all while hooked up to machines. Then,to make a long story short, we asked to be referred to a specialist in the Bay Area. Finally after 10 days, we were going to get some answers.
Congenital Heart Disease; diagnosis, Supra ventricular Tachycardia, Ebstien's anomaly (tricuspid valve) causing atrial arrhythmia's with rapid heartbeat. AND she had a whole in her heart.  But luckily she didn't have to have surgery. So, with that diagnosis, she was put on Digoxion and we were able to go home with our baby. This was of course not the end of  her problems or ours. The medication was very sensitive and we had to check her heart rate before and after administering it. I was quite nerve racking, but we were happy to have our baby home. We were told to keep her from crying and getting too upset... (Imagine that! crying at 2 months old). She remained on this medicine for a year and a half and decided to take her off of it and see how she did without it. They noticed that the whole in her heart had closed on its own and that the back flow of blood going the wrong way was lessening.  Ebstiens Anomaly was determined to be mild now.  The firing agent in her heart was stable and she looked much better. She would need to see a cardiologist every year and that was that. Hmmm...
A few times, when she was sick with a fever, her heart rate would rise to 220 but always corrected itself so there wasn't a cause for alarm. She would see the cardiologist every year and every year would get better and soon,  October 2010 she was given a clean bill of health with a follow up when she became a teenager.
We were so happy and didn't really think about it again.
Until, June of 2011, She was playing at a friends house. I went to pick her up and when I got there she was lying down outside on a hammock. I didn't think too much of this, she doesn't like leaving her friends's too much fun. Matter of fact her friends' grandma has a beautiful garden and her friend and brother were picking potatoes, which is a highlight...I was just wondering why she didn't want to join them, when she said she wasn't feeling well. I thought this was a ploy to stay longer...She complained of her lip bothering her and I wanted to check to see if she bit her lip but she didn't want to sit up. We had somewhere to be, Big Little was performing at the Arena. I took a change of clothes for her, and wanted to have her change before we left but she wasn't feeling well. I took her to the car and buckled her up. We were headed home to pick up Mr. D and Little J.
I didn't have a clue just how bad she was feeling. She fell asleep during our 10 minute drive home. When I arrived home, I put the windows down ran into the house to tell everyone it was time to leave , but Mr. was just getting out of the shower and Little G came in the house and went straight to bed. I went to see where Little J was and to make sure he was ready when Mr. D overheard  Little G say, "I just want to go to sleep forever". This alarmed Mr. D and wondered if she had a bad time at her friends, as it seemed uncharacteristic of her to say this.
He went over to her and felt her and asked me to take her heart rate. The stethoscope had been packed away for quite a while. I grabbed it, and went to her and could barely count fast enough...I counted 250 BPM. I wasn't sure what to do, she was very lethargic and her color was greying... I called the Doctor and my phone dropped the call, I asked Mr. D to call on his phone and ran next door to the neighbor's house...remembering that he was a doctor.  He came over with his monitor and confirmed 240 bpm. He tried to do some vagal maneuvers but nothing worked so he suggested I call the paramedics. By this time, an hour had almost past. When I told her she was going to go to the hospital she started to cry really hard and Mr. D picked her up. The paramedics just arrived in her bedroom when you could see her color looking better as Mr. D was holding her. He lay her down to have the paramedics check her out and our neighbor, the Dr., said he thought her heart stabilized and took her pulse and sure was beating at a normal rate again.
Our neighbor doctor, filled the EMT's in with the details and then they took her to the hospital.They did an ECG and all looked good so they released her and ordered a halter monitor for 24 hours. The results came back just fine. She took it easy as she was worried about having a problem. Then, one day, the second day of school to be exact, she had another episode and then two days later and they started coming more frequently. The school doesn't have a nurse and this brought about different problems. This was/is so stressful.  Finally, She was put on a heart monitor for 30 days to record these events. And this brings us up to date. She just finished with the monitor on Saturday and now we are now waiting the results. 
They have 2 tentative plans..1.) medication 2.)surgery

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