by LaCee Clayburn, Kimber’s Mother
Heber City, Utah
Our sweet baby girl, Kimber, was born via emergency cesarean section on August 8, 2011. We had planned a c-section that coming Wednesday (two days later) but my water broke unexpectedly. Within an hour of arriving at Utah Valley Regional Medical Center, Kimber’s heart rate accelerated to an alarming 280 beats per minute, I was immediately rushed to the Operating Room, and Kimber was delivered within minutes. She was rushed to the Neonatal Intensive Care Unit (NICU) where they administered Adenosine, a drug that makes the heart literally skip a beat so it can restart at a more normal pace.
Kimber’s little heart shocked all the medical staff when it immediately started beating at a steady, normal pace and stayed in normal rhythm for the next 4 days. It was decided that Kimber’s fast heart rate was caused by an infection and she was kept in NICU during my 4 day stay to recover from the c-section. After those 4 days Kimber’s little heart stayed normal and seemed healthy, so we were both released from and sent home.
We got 3 blissful days at home with our sweet baby girl. On day 3 I noticed she seemed extra sleepy and she refused to wake up for feedings. Around 7:00 pm we took her to the local after hours clinic in hopes that they would tell us she was fine, just being a normal newborn baby. Our hopes were quickly dashed when the nurse put a heart monitor on Kimber and it started beeping frantically. Kimber’s heart was beating at 280 beats per minute again. The nurse calmly walked us to the emergency room down the hall, and handed us over to their capable staff. Heber Valley Medical Center does not typically brand new babies with a heart rate that fast. They immediately inserted an IV, started an EKG and called Utah Valley Regional Medical Center to see if they wanted us to come down there. They recommended that they send us straight to Primary Children’s Medical Center. Kimber amazed all of Heber Valley’s ER staff with her perfect color and breathing despite her rapidly beating heart. She clearly wasn’t in distress as of yet so they opted to send us via ambulance rather than Life Flight.
We arrived at Primary Children’s around 10:30 pm. Poor little Kimber slept the whole way, but as soon as we arrived she started screaming frantically for her Mommy, she was quite starved at this point. The ER staff was unbelievably fast to respond to Kimber’s needs, and also very in tune with my husband and my needs as well. I remember one specific resident who was constantly asking me how I was doing and if I was going to be OK, after we had been in the ER for about an hour she asked me what I needed, I am a breastfeeding mother and at this point it had been over 4 hours since Kimber had nursed, so I desperately needed to either feed the baby or pump. I told the resident, and she was so fast to get me into a private room so I could take care of things, even right down to providing bottles for me to store the milk. She promised me she’d come get me if anything changed before I was finished. It took the ER staff over 2 hours to get Kimber’s heart to slow down to a steady 140 bpm. In that time her heart actually spiked up to 315 bpm because she was so upset and inconsolable. This was the most terrifying night of our lives. We felt so helpless sitting in an ER room watching our newborn baby scream and struggle against everyone, not knowing if they were ever going to get her heart to slow before she went into heart failure.
Finally around 1:00 am Kimber’s heart was stable, and we were moved to the Children’s Surgical Unit for observation while they got her started on a beta blocker to keep her heart rate under control. At this point we were told Kimber would be admitted and kept there for about 24-48 hours and then we could take her home. My husband had to go back to Heber to work the next morning and left me around 6:00 am, neither of us had slept a wink as we took turns holding and loving on our exhausted baby girl. I didn’t know what to do on my own without his support. Shortly after he left, Kimber and I were taken down to the first floor for an echo on her heart. While we were gone the sweet nurse assigned to Kimber got me a nice breakfast set up. I found it waiting for me when we got back. She came into the room when she heard we were there and made sure I was OK. She all but commanded me to eat and take care of myself and then offered to watch Kimber while I got some sleep, I thanked her but refused to leave my baby in anyone’s care but my own.
Kimber was tentatively diagnosed with SVT (Supraventricular Tachycardia) and the Cardiology team was confident the beta blocker would keep it under control and we’d be on our way home within a day or two. But Kimber and her little heart had other plans. Rather than staying out of SVT she persistently went in and out of it every few hours. After 2 days in CSU, Kimber went into SVT for what felt like the millionth time but this time she wouldn’t come out of it. The nursing staff tried every maneuver they could and then the doctors were called in to administer Adenosine. They tried the Adenosine twice with no results so we were rushed to the Pediatric Intensive Care Unit. Kimber was given 3 different beta blockers in a matter of hours without any luck. Kimber spent almost 48 hours in SVT. Her little heart kept a steady pace of 280-290 bpm through that whole time and we were all told not to do any maneuvers to get her out of it. We were just left to watch and wait. Kimber had 2 or 3 echo’s done to make sure her heart wasn’t getting weak. Through that 48 hour stretch Kimber continued to amaze everyone. She was awake almost as much as most newborn babies are. Her coloring was nice and pink. Her blood pressure and her cap refill stayed perfect. They couldn’t believe that without a heart monitor on her one would never know she was in SVT, her little body handled it so well. At about the 48 hour mark I heard the monitor beep and looked up at it to see that her heart had FINALLY slowed to 120 bpm. I was so relieved I began to cry as I held my sweet baby and thanked God. We were given instructions to use physical maneuvers to get her out of SVT as soon as possible from there on out.
Day 2 in PICU Kimber started showing some signs that only a mother would notice wasn’t right. Her right arm started having spasms similar to a large muscle spasm, then her right leg started to follow suit. At this point I had learned how wonderful everyone at Primary Children’s is when it comes to listening to the parents, so I was not afraid to point it out to the RN on shift and I asked her to please look into it. It was less than an hour later when Neurology arrived to monitor Kimber for a bit and do an EEG. The EEG came back with only a slight variance but everyone was more than willing to admit that a mother’s instincts are always worth listening to so they put her on an anti-seizure medication, within hours the spasms quit and Kimber was feeling comfortable again.
The next day I began to wonder what else could go wrong when Kimber started to get fussy and act like she was in pain and I noticed her stools weren’t looking right. Kimber is my second baby and by this point I knew what newborn stools should look like so I called in the RN. She suggested I may be seeing things but upon my insistence of being a mother and knowing my baby she called in a resident. I am amazed at how well all the staff at Primary Children’s listen to parents! Kimber did have blood in her stool so they ordered a belly x-ray which showed a possible obstruction in her bowls. Everyone agreed to just watch it closely and hope for the best. I was discouraged when the next day they ordered me to stop all feedings and they started a fluid IV, they were afraid the SVT was causing Kimber’s bowls to die off from too much or too little blood flow. I was heart broken, I felt the only thing I was doing to let Kimber know I was there and I still loved her was feeding her, she loved to eat and I loved knowing I was doing something to make her stronger through all of this. I admit I cried a lot, the wonderful nursing staff in the PICU were always there to comfort me and make sure I was getting everything I needed. Kimber was put on a fast and had belly x-rays done 3 times daily for 48 hours, after which time her stools started looking OK again and the supposed obstruction disappeared on the x-rays. I was overjoyed when they told me Kimber seemed fine and I could start feeding her again!
Every day we were in Primary Children’s we were told we’d be going home “within the next 48 hours,” but every day it was pushed back again and again. Kimber’s little heart was being stubborn and they had decided she didn’t have simple SVT, but something more complex that was causing the SVT. We were in PICU for 2 full weeks trying everything Cardiology could think of to keep Kimber out of SVT for good. Our poor baby girl hit a point where her little heart was in SVT one second and out the next for a few days straight. It was heartbreaking to watch the heart monitor jump from 140 to 280 to 140 and then back again before you could even blink.
During this time Kimber had a “Code Blue” called on her when the heart monitor showed she was in V-TACH and the RN and I could not get her out of SVT using any maneuvers no matter how hard we tried. That was another terrifying moment for me as the room doors were suddenly thrown open and equipment was brought in with about 20 PICU staff members. One of the residents stood back and watched me through it all, I remember her putting her arm around me and saying “she’s OK it was just a precaution, I can assure you that what I am seeing is nothing serious Mom, I think your nurse just panicked, but I can promise you that your baby is going to be OK.” During that time another resident had also kept her cool and took the ice bag from the nurse and very calmly applied it to Kimber’s face herself, and thankfully Kimber’s little heart instantly slowed to it’s normal pace and everyone relaxed. (The bag of ice is a maneuver I loath, it causes what they call the “dive reflex” by placing it over the baby’s forehead so that she’ll hold her breath and make her heart skip a beat and restart at a normal pace).
During her PICU stay Kimber also had 4 IV Infiltrates, 2 of which were Amiodarone IV Infiltrates, and the treatment wasn’t effective. We were left to watch her poor little feet as they swelled to twice their normal size and turned purple, but over time they did heal on their own. Every time Kimber needed an IV replaced the IV team would come in and as soon as they realized it was Kimber again they would be very disappointed, every one of them started keeping count how many IV’s she had had and one gal even cried when she saw that it was Kimber again. She apologized and told me she just couldn’t stand causing my sweet baby pain yet again. Kimber had over 18 new IV’s put in through her stay in PICU alone.
We were elated and overjoyed after 2 weeks in PICU to be told they were moving Kimber back to CSU. They had finally found a medication combination that was going to work, but we needed to stay for close observation for a few more days to make sure Kimber handled the medications well. Kimber continued to go in and out of SVT, the Cardiology team requires a baby to stay out of SVT for at least 72 hours before they will release her to go home. Kimber was only going about 48 hours at a time SVT free.
We went back to being told daily that “tomorrow’s the day” and getting our hopes up over and over again. I am so grateful for such a wonderful nursing staff who tried so hard to keep me sane! And every day that we were still there and a nurse from the previous day came back on shift she would come in Kimber’s room whether she was assigned to her or not and the instant response was “Oh I was so hoping you wouldn’t still be here! We’re all pulling for little Kimber and all of us just want to see her go home!” Kimber had everyone on Primary Children’s medical staff wrapped around her tiny little finger. Random doctors and nurses would just walk into her room with only one reason, “I just had to come see this adorable, tiny baby girl with all the dark curly hair that everyone is talking about!” The nurses and doctors were constantly begging me to put Kimber down and leave the room for a bit, supposedly so I could take a break but we all knew it was really so that they could hold and cuddle her since I wouldn’t let her out of my arms otherwise. It was a race between all the nursing staff to see who could get to her first to hold her while I was gone.
Almost 4 weeks after our admittance to Primary Children’s ER, Kimber was finally given an official diagnosis of PJRT (Persistent or Permanent Reciprocating Tachycardia) and the sweet Intern we had been seeing during our second stay in CSU came to tell us that Cardiology had finally decided it was time to send Kimber home. They felt that if they waited for her to stay out of SVT for 72 hours straight we’d end up living there for good. Cardiology came and spoke to me and let me know that they trusted I knew what to do, and since I had been there with my baby 24/7 since her admittance they felt I had seen every scenario with my baby and I knew what to do at home if emergency measures needed to be taken. It felt great to know I had the confidence of the whole Cardiology team, but I was also scared out of my wits to take a tiny baby with SVT home and be trusted to know when she was in it and know how to get her out of it on my own!
September 1, 2011, we got to take our sweet baby girl home for the 2nd time, and all we could do was pray we wouldn’t ever be back. We loved ALL the Primary Children’s medical staff and we truly miss seeing all their sweet, smiling faces but we absolutely could never miss the hallways and walls of that place after such a long stay. I feel horribly sad for those families who end up staying much, much longer than we did. It’s definitely not easy. We had a lot of favorites during our stay, we even set one of the PICU RN’s up on a blind date with a great friend of ours (see? good things can come out of bad situations).
Today Kimber is an adorable, giggly, smiley clown of a 10-month old. She keeps us all laughing and brings so much love and light into our home. She has an older brother who is almost 3 and they both love each other so very much. We couldn’t feel more blessed to have such a little cutie in our family. She endures medication daily, has a few SVT episodes monthly and is looking at future ablation surgery to correct it.
Story Lines is a feature on Play Ground telling personal stories and experiences about the hospital – written by the individual. If you would like to share your experience on the blog, please contact us.
