Taylor's Journey: Neonatal ICU

Well...where to begin! Things are going to be fine but there have been alot of scary moments over the past 9 days. It's been a rough start for wee Taylor and she has had quite the rollercoaster ride to say the least. We've done our best to keep our parents and siblings updated with all that's been going on but because it's been such an emotional time for us we haven't yet updated the rest of you. Things are looking much brighter as of last night and she should be coming home on Monday, but she has been in Neonatal Intensive Care since the day after she was born.

She hadn't been nursing well all through that night, but was showing all the signs of being not just hungry but starving. By 6am I was near meltdown and buzzed for the nurse because I didn't know what else to try. She said she'd move Taylor into the nursery for a couple of hours so that I could get some rest (I hadn't slept in 48 hours at this point) and she'd try to settle her with a bit of formula. At 8:30am the nurse came into my room to tell me that Taylor stopped breathing a couple of times, turned blue and needed free flow oxygen to recover, and that she was moved over to Neonatal Intensive Care. Oh my god. So she walked me over there (NICU) and when we got to Taylor she was surrounded by about 8 people working on her and of course I lost it. I was alone since it was early in the morning and Francis was still at home with Marissa. The nurses sat me down, brought me a box of kleenex and started explaining what they were doing and what was happening.

She was admitted to NICU on Friday morning after the 2 spells of apnea (absense of breathing for more than 20 seconds) in the postpartum nursery. The result of her not nursing properly had also drastically dehydrated her. They were also hearing tachycardia in her heart (where the resting heart rate is more than 160 beats per minute). She was slightly tongue tied, and had a transient skin rash. To see if she had any infection they took blood and created cultures in the lab which would have to sit for 48 hours to see if they would grow. They also took blood to measure the levels of oxygen in it. So an IV was started with two different antibiotics as a precaution until they got the cultures back and could rule out any infection. Chest and abdomen x-rays were then done to check for problems in the lungs, heart, or gastrointestinal system. Then they did a spinal tap on her, took some spinal fluid and sent cultures to the lab to also look for infection. At 3pm that day the doctor clipped the little flap under her tongue. She nursed right after and it did the trick because she fed perfectly. She had 3 more apnea episodes for a total of 5 that day.

Saturday they did x-rays again and the doctor ordered an ECG (electrocardiogram) of the heart. The ECG revealed premature ventricular complexes (PVC's), where an extra beat comes sooner than normal. Then there's a pause that causes the next beat to be more forceful. These are apparently very common and most people have them at some time. Usually no cause can be found and no special treatment is needed. The premature beats may disappear later. They then did an ultrasound of her heart, and the result was a normal structured heart. She had 5 apnea episodes on Saturday, 4 of them requiring free flow oxygen for her to recover.

ECG

Heart ultrasound

On Sunday the cultures came back negative, there was no infection so they stopped the antibiotics and took out the IV. A 24 hour holter monitor was put on her that afternoon to record all the activity in her heart over a 24 hour period. I was discharged in the afternoon and going home without Taylor was really hard for me, with everything she was going through I wanted to be there with her. She had 2 apnea episodes on Sunday, needing oxygen to recover on both. They still have no idea why she stops breathing.

24-hour Holter Monitor

On Monday the holter monitor came off and was sent to a Cardiologist at Children's to analyze. She had another 2 apnea episodes on Monday, needing oxygen both times.

Daddy Love

On Tuesday she had an EEG to measure the electrical activity produced by the brain, recorded form electrodes placed on the head. This was sent to a Pediatric Neurologist at Children's to analyze. The results of the 24 hour holter monitor on her heart came back and showed ventricular tachycardia (VT), a fast heart rate that starts i the lower chambers. They started her on propranolol late that night to treat the VT. She had another 2 apnea episodes, again needing oxygen to recover.

EEG

Wednesday was her first day with NO apnea episodes, very good news. She also was back at her birth weight on Wednesday. I've been pumping round the clock so that she's got breastmilk at the hospital when I'm not there. She hasn't needed any formula and is taking bottles and nursing both very well. At least one thing's working for us!

Angelic isn't she?!

Thursday (yesterday) was probably our worst day. The results of the EEG came back abnormal, indicating an underlying structural injury. They then sent her for an MRI to visualize the structure and function of the brain. The images were immediately sent to the Pediatric Neurologist at Children's to read. Shortly after we were told that he would be coming over to give us the results in person. That can't be good is all that I could think all day. It was the longest day of my life waiting for him. When he arrived and said right away that he had positive news I can't even describe how instantly relieved we were, and of couse I immediately welled up. After going back and forth on the abnormal EEG results and the MRI, they finally discovered a technological error on part of the EEG. And it was that piece of the EEG that indicated the structural injury. So Taylor's brain is perfectly normal and healthy and he doesn't see any underlying neurological problems. Another holter monitor was put on her yesterday to record the heart activity for another 24 hours so that they can see the effect of the meds (propranolol). No apnea spells yesterday, that's 2 days in a row!!!

Today things are looking much brighter. It's quite possible that it's the ventricular tachycardia that was causing the apnea spells, because she stopped having them once she was put on the propranolol. They want to see 4-5 days without any apneas before she can go home, so that would be Sunday/Monday. Before she can go she also has to be set up with a Pediatrician and a Cardiologist and have appointments booked with each. The holter monitor came off today, was sent to the Cardiologist and apparently they are happy with what they saw, so the meds must be doing the right thing. No idea how long she'll be on the meds, that will be determined under the care of her Cardiologist who is apparently the leading one in the city for this.

She's done so well through this whole ordeal, she is very content, has tolerated all the poking/prodding/tests extremely well, sleeps well, eats well and loves to be cuddled. It's not over yet, we have to deal with her heart now but the Cardiologist that they've lined her up with is the leading one in the city for this, so we feel really good about the care she's going to get. Everyone in the NICU has been absolutely outstanding, we couldn't have asked for better people and care.