Help Is On The Way...

We got to meet Lana tonight, the Developmental Aide lined up for us through Pacekids. She seemed very nice and we had a good feeling from her. She spent a little bit of time with Taylor and told us about her background. She was most recently working as an aide to adults and felt that her role was more to do with maintenance. She wanted to be more involved and see progress being made with her clients so she decided to start working with children instead. In the short time since she made the change she's found it already very rewarding and is really enjoying her involvement with the families that she works with and seeing the children make progress.

Lana is able to start working with Taylor on July 6th. She'll come to the house for 2 hours every day Monday through Thursday, and we'll go with her to Pacekids on Fridays for the Family Support Program. We're counting down the days!

Father's Day

Small Bits of Progress

Well it's been a few months since Taylor's difficult journey began. So very much has happened, and lots of things are currently in the works so I will try my best to update you on it all. It is quite long, so give this a read when you have 10 or 15 minutes.

First, I'd just like to say thank you so much for your support and encouragement, it's really what's helping us work through this emotional time. I haven't been very good at being in touch, either via phone or email. My world is a series of doctors appointments, therapist appointments, tests, program intakes, caseworkers, assessments, interviews, and information overload. So please don't take it personally if you haven't heard from me/us and understand that we're just still somewhat upside down and extremely busy. So many of you keep asking what we need, and we're still pretty unsure what that is, but I think what we need in the meantime is family and friends. We're not really in the right space to be the initiators right now (with everything else we're trying to stay on top of) but really would love to hear from you, chat on the phone, get together, anything! If we're home, we do answer the phone. If not and you don't hear back right away, just keep bugging us!

So...when we left the hospital in March we didn't yet have the results of the Visual Evoked Potentials (VEP) test. This test was to determine if the signal was getting from the optic nerve back to the part of the brain that is responsible for vision. The results showed that it was. We saw the Opthamologist at the end of March and he did an examination of Taylor's eyes. The structure of both eyes was normal, and the nerve was also normal. Based on Taylor's behaviours in response to various tests and visual stimuli she was diagnosed with Cortical Visual Impairment (CVI). So, her eyes are normal, the nerve is normal, the signal is getting from the nerve to the back of the brain, but her brain isn't interpreting the signal. Your eyes focus, but your brain "sees", is how it was explained to us, and the doctor says that she sees light, colours and shapes, but not images. This explains why she has always preferred lights and not faces or objects. Over the past three months we have noticed a definite improvement. Where three months ago her eyes were all over the place, never fixing on an object or face, and never following anything with her eyes, her eyes are now much calmer, she focuses on objects and faces and follows them briefly. This is all very encouraging. We have been referred to CNIB (Canadian National Institute for the Blind) to access their services for children with vision loss. We went through the intake process at the end of May and we have a Functional Vision Assessment booked for the middle of July. This is done at CNIB and will help determine what things/colours/areas capture her visual attention. An Occupational Therapist from CNIB will then work with us in our home to help appropriately stimulate her vision.

The other outstanding test results when we left the hospital was the ABR (Auditory Brainstem Response). This is a neurological test of auditory brainstem function in response to auditory stimuli. Taylor's results were abnormal in both ears. This is going to be repeated in the next month or two as well as some other test that I can't remember right now. Infants with abnormal ABR results do not necessarily have hearing problems. Taylor does startle to loud noises, and is recently turning her head to figure out where the sound is coming from. The Neurologist is very encouraged by this, so we'll have to wait and see what the further testing reveals, if anything.

Taylor's First Easter

At the end of March we began therapy with Infant Services at Children's Hospital, which is a program for children from birth to three years of age with neurodevelopmental concerns. They focus on movement (rolling, sitting, crawling, walking, running), communication (talking, understanding, gestures, signs), play and attention (using toys appropriately, increasing attention span), hand skills (eye-hand coordination, reaching, grasping, manipulating), feeding (self feeding, texture progression), self care (bathing, dressing), behaviour (sleep concerns, temper tantrums, aggression), family well-being (family relationships, coping, community resources), equipment (walkers, braces, seating, bath seats), growth and weight gain. The Team is made up of a Physical Therapist (PT), Occupational Therapist (OT), Speech-Language Pathologist (SLP), Social Worker, Psychologist and Clinical Dietician. They explore the child's strengths and needs, provide information about child development, discuss and demonstrate ideas to try at home with the child, offer emotional support, coordinate services, advocate for parents and child, and provide links to other programs and resources.

We have been to Infant Services appointments at Children's for PT and OT every 3-4 weeks. They have given us many different exercises to work on her head control, to encourage her to push up when on her tummy, to help her discover her knees and feet, encourage her to reach, and work on supported sitting. Her head control is progressing, slowly, but progressing indeed. I can't wait for her to be able to hold her head. Tummy time is coming along, she doesn't like it, but she's able to go little bits longer each time. She's pushing up for short periods with her arms bent and elbows still behind her shoulders. The goal we're working on now is getting her to push up on straight arms. She's still doesn't reach for anything or grasp objects. She will hold onto your finger, and if you put a small/thin object into her hand she will hold onto it briefly. She does seem to notice her hands from time to time. She brings them together and is clasping them now too. She still has closed fists with thumbs tucked in, but is relaxing and opening them up more often. The OT is making a splint for her right thumb at our next appointment, as it seems to be a little tighter. Because she's not reaching yet, she still hasn't made contact with her knees and feet, so we're still working on encouraging that with positioning and guiding her arm from the elbow. The other goal for now with all the exercises is learning to sit on her own. Right now she can't even sit with support, she flops over to one side or the other. We have been referred to seating clinic and they will be able to design an insert for her stroller so that she can sit in it without tilting over to one side. They will also assess whether or not she needs other equipment to assist with seating. She's now outgrown her infant tub and at our last physio appointment they ordered a bath seat for her. I'm not sure how long it takes. It's kind of like a lawn chair with mesh fabric, a reclining back, straps to secure her and a head support. It fits inside a regular tub, and if she isn't reclined too far back there should be enough room for Marissa and Taylor to have bathtime together.

The exciting news is that she learned to roll over and it happened quite quickly. Around 7 months she started twisting her body when she was on her back and very soon after she was rolling onto her side, but her arm kept stopping her from getting all the way over. Within a couple of weeks she figured it out and now she's rolling easily from her tummy onto her back and sometimes from her back onto her tummy.

We started Taylor on solids and it's going really well. It's pretty messy because she is very wiggly, but she's doing great. When you hold the spoon at her eye level and bring it down towards her mouth she opens her mouth almost every time, so I think that's one of the areas that captures her visual attention.

First taste of solids

Since birth, Taylor's breathing has been very gurgly and it's far more pronounced during feeding. They are concerned that she may be aspirating (taking some fluid/food into her breathing tube). She has been referred to another study where they will put barium in her bottle/food, and put her behind an x-ray while feeding so that they can watch it move down and see if she is inhaling any of it. If she is, treatment could be as simple as thickening up her fluids, or as serious as requiring her to be tube fed. That was the lovely news I was told at the Pediatrician this morning.

The Pediatrician has also put her on an inhaler. Last week when we saw him he was hearing wheezing. She can't be on ventolin (salbutamol) because of her arrythmia so he put her on one called Alvesco. It is an inhaled corticosteroid that helps to control symptoms by decreasing inflammation in the lungs, thereby opening the airways and improving breathing. Where salbutamol is a "reliever" medication used to relieve the symptoms of wheezing, the Alvesco is a "controller" medication to prevent the symptoms from occurring. She has been on it for a week and when he listened to her chest today there was no wheezing. The wheezing could be asthma, but aspirating her fluids/food can also cause wheezing. To air on the side of caution he would like her to stay on the inhaler for the next few months while things are sorted out and whether she is aspirating is determined.

Mommy's favourite photo

Sleeping beauty

In April we were assigned a caseworker with FSCD (Family Support for Children with Disabilities). FSCD is a Government of Alberta program that provides supports and services for children with disabilities and their families. We met with our caseworker in early May. They have put funding in place to cover sibling care for Marissa while we are at appointments for Taylor, as well as funding for weekly respite care so that I can have breaks. They are paying for parking and mileage for our appointments. And the very best thing is that they are providing us with a developmental aide in home for 2 hours every day (not weekends). This is being provided through the Infant & Family Support program at Pacekids.

Her SIN card arrived in the mail!

Pacekids is a non-profit organization which provides learning programs tailored for infants and children with special needs. In the Infant & Family Support program, parents and children learn functional skills through interactive play in the Pacekids' classroom and in the child's home. Developmental aides are assigned to work with the child daily, on a one-to-one basis. The purpose of this program is to assist children in achieving goals in the areas of behaviour, communication, social interactions, cognition, motor development, mobility and functional living skills. Pacekids programs help kids discover their hidden potential. So often, children with motor disabilities and special needs have intellect and abilities that are hidden by their difficulties to communicate or demonstrate. The right combination of support and encouragement can draw out a child's potential and build on his or her abilities. The earlier the child's intervention begins, the greater the benefits. Pacekids classrooms bring together small groups of children with similar requirements. Contact with other children provides motivation and modeling that promote confidence, learning and social development. The children learn at their own pace while having fun with their peers in an inclusive and accessible environment. Their approach empowers parents with information and skills to successfully meet day-to-day challenges and to help their children develop. Parents and caregivers find the resources and support at Pacekids to guide them from diagnosis and information gather, through assessing the services they need, and on to developmental successes.

Mother's Day

Mondays through Thursdays the aide will work with Taylor and I at home for 2 hours a day. On Fridays we go to Pacekids for the 2 hours with the aide and we are all together with other children and their mothers and aides. This gives us the opportunity to connect with other families. I went with Taylor to Pacekids last Friday and I think it's going to be so helpful to have people to talk to who are in similar situations. We got a call this week that Pace has found us an aide so the details will be ironed out over the next week or so, we will meet with Pacekids and FSCD to set goals, and the aide will be able to start with us at the beginning of July. I am so incredibly thrilled that I will soon have daily support at home for Taylor and am hopeful that it will help her progress in her development.

We continue to see the Neurologist. Taylor did have one episode of very mild infantile spasms (seizures) about a month ago. They bumped up her medication a bit since it is based on weight and she has grown since she first went on it. Those mild spasms were the only instance of them re-occurring since the medication got them under control by the 8th of March. The Neurologist is very encouraged that the medication is working and that she has not relapsed with seizures, because this form of epilepsy is very difficult to control. He is also encouraged by the progress that she has made.

I sometimes get caught up wishing that she was further along, but am trying really hard to focus on the fact that she has made some progress and that is very positive. Three months ago she really wasn't doing anything. Now, although she still isn't smiling (which breaks my heart), her head is getting stronger, her scattered eye movement has calmed down and she fixates on things, she turns her head to figure out where a sound is coming from, she clasps her hands, and she's rolling over! When I look at her today versus three months ago, I have hope. I will never forget the doctor telling us that Taylor will never develop as a normal child. What is "normal" anyways? What her future holds may be uncertain, but what we know for sure is that we are going to do everything we can to help her along her journey. She was brought to us for a reason and we will all be touched by the lessons she has to teach.

Taylor's Difficult Diagnosis

We have some difficult news to share, we have shared this with some of you already, but certainly not all. Unfortunately the struggles Taylor faced in her first couple of weeks are not behind her, they're sadly just beginning.

Shortly after Christmas I was getting concerned that she wasn't yet smiling, which should have happened by about 2 months. As each week passed with not even a subtle smile it worried me more and more. I was so pre-occupied with the absence of a smile that I wasn't noticing that there were so many other things she also wasn't doing. Getting further into January as she passed her 3 month mark and close to 4 months my worries kept growing. Her head wasn't getting stronger, still no smiles or expressions of excitement, no reaching for toys, no holding on to a toy, no playing with her hands and feet, not following objects with her eyes...all the things that she should have been doing by that stage. At our 4 month checkup with the pediatrician I took my list of concerns and he was also very concerned. On his examination of her he said that her visual attention was very poor, she won't focus on something or follow it. He had us do a 4 month questionnaire, and the results showed that she was significantly behind developmentally in all the categories...communication, motor skills, fine motor skills, problem solving, and personal/social. He put in a referral to the Infant Services Program at Children's Hospital, a program that has access to different therapists to assess her needs. He also put in a referral to Early Intervention, a program that sends someone to the home to assist with encouraging her development in different areas. And he also requested vision and hearing testing, and another EEG. She failed the initial screening test for hearing and the Audiologist said to not be concerned yet, as it may just be a result of fluid behind the eardrum, and they scheduled a follow-up diagnostic test. As we got closer and closer to her 5 month mark I got more and more worried and had a gut feeling that something was wrong.

Two weeks ago, on March 6th, she was having her first morning bottle and I noticed something strange with what she was doing with her arms. I stopped feeding her and immediately knew something wasn't right. She would bring her arms up, tighten and roll her eyes to the right. Each time only lasted a couple seconds and she would repeat it every 5-10 seconds. This went on for a few minutes and I thought she was having seizures. I put her down and grabbed the video camera and managed to capture a few of them before the battery died. I called the HealthLink line and it put me on hold so I called my friend Kim to get her sister-in-law's number who is a nurse. She told me to just call 911, so I did. They got there within about 10 minutes. Me not being technologically skilled couldn't figure out how to change the battery on the camera to show the paramedics. I explained what had happened and they couldn't really confirm whether or not they were seizures, but after hearing everything that happened with her when she was born, they said it wouldn't hurt to go to the hospital. So we got her in her carseat and into the ambulance and Francis left work and met us at Children's. She was still stable when we got there so we were sent to the waiting room. I called the pediatrician's office from the waiting room and he was immediately worried, said it sounded like Infantile Spasms and faxed a letter over to Children's with his observations of her. We got in after about an hour.

We showed them the video from home but they didn't confirm one way or another. While we were there at about 2pm she started having another one and it was witnessed by the nurse and the Resident Neurologist and they were confirmed as seizures. They brought down a technician right away and did an EEG on her to record the electrical activity in the brain. They were hoping to capture an episode while she was hooked up but of course she had one not even five minutes after they finished. The results came back and the EEG showed a characteristic pattern with very chaotic and unorganized background brain activity. The Neurologist then told us that the seizures were called Infantile Spasms, a very rare and very severe seizure disorder (epilepsy), and that it is often associated with existing neurological or developmental problems. Infantile spasms often go away by the time the child is three or four years old, but often sooner than that. However, many children with infantile spasms continue to have neurological and developmental problems, or may develop other even more severe forms of epilepsy later in life that are even more difficult to control. What's characteristic of infantile spasms is that they occur in clusters. The seizures repeat every 5 to 30 seconds, sometimes 10 to 40 times in a single attack. Her attacks last about 6 or 7 minutes. The spasms become less intense and farther apart as the cluster progresses. She was admitted to Children's that night and started on anti-convulsant medication called Vigabatrin. A flurry of blood tests, urine tests, spinal tap, and an MRI were all put into action to try and determine the underlying cause. Hearing and vision tests were done and we are still waiting on those results.

Taylor's seizures were under control by Sunday afternoon, she responded well to the medication within 2 days which is a positive. The blood, urine and spinal tap results that have come in so far have not shown anything. The MRI was done and revealed a brain malformation. The corpus callosum (the fibres that connect the two hemispheres) is thinner than it is supposed to be. The significance is that the corpus callosum is the communication link for all brain activity. It is most likely the reason for the seizures and that she is so far behind developmentally, however it is possible that there is an underlying metabolic disorder/disease that is a contributing factor. A full metabolic workup is under way, some of the results take weeks to come back.

Because her development was so behind prior to the onset of the spasms, the Neurologist feels confident in saying that she will never develop as a normal child. What they can't predict is what kind of gains she will accomplish. That is the part that is breaking our hearts right now. That is what we want answers for and they can't give them to us. We just have to wait and see and in the meantime be educated on what we need to do to stimulate her development and the rest is up to what she is or isn't going to be able to do. Like I said earlier, I've had a gut feeling that something was very wrong for a while, but I had no idea it could be something so devastating. We are still trying to digest all this and are overwhelmed beyond belief. We're holding up okay, and trying to absorb the fact that our little angel is never going to be normal, and we can only hope and pray that she will be able to make slow steady gains and just always be behind. The possibility of her not being able to develop any further is our biggest fear and we're trying not to go there because it's just too much to bear, but we're so scared right now it's sometimes hard not to let our minds wander. We can just take this one day at a time, be strong for each other, and stay positive and hopeful that her development will slowly progress. We love her with all our hearts, no matter what her future holds, and we're going to do everything we can to help her along this journey.

We got home from Children's on Tuesday night and it has been nice to be home and all together. The seizures are still under control which is a positive sign. She has an appointment in a couple of days with an Opthamalogist to do a thorough examination of her eyes. The anti-convulsant medication has a side effect that can cause loss of peripheral vision so they are going to need to monitor her eyes closely while she is on it. I think the only other outstanding test is that they need to do a muscle biopsy in a few weeks which is part of the metabolic workup. It's just day surgery but she'll have to go under general anaesthetic and they'll make a small cut in her leg and take a sample of the muscle.

We're going to be inundated with appointments for some time between all the different doctors, services and resources available to help us. It's all so overwhelming. Sorry for such a long note, but I wanted to try and explain everything as best as I could.

All Is Well On The Homefront

We haven't written since we brought Taylor home but as they say "no news is good news" and we are happy to say that things are going very well. We've been settling in to the new routine and are happy as can be to have Taylor home.

We met the pediatrician on Oct. 31st and he did a very thorough exam of her and recorded a detailed overview of everything Taylor went through in the hospital. He'll follow her for now until such time that it's appropriate to send her back to a family physician. We went to the cardiologist last Thursday and that went very well. The type of arrythmia that she has is common in babies and the vast majority of babies grow out of it within 6 months to 1 year, so that is very hopeful. The arrythmia she has is not dangerous because a) it does not produce fast beats, and b) it is not incessant. Before she went on the beta blocker medication, the arrythmia was occurring 8% of the time, and since she's been on the meds, it's down to 2 or 3% of the time. The way it was described to us is that there is an irritable patch of cells that are competing against the heart's natural pacemaker. Because this patch of cells isn't beating any faster than the natural pacemaker, it doesn't produce runs of fast beats, but rather just occasional extra beats. The cardiologist is going to monitor her over the next 6 months to a year, with the anticipation that this will outgrow itself within that time. So for now she'll continue the meds until at least the next appointment which is 3 months from now. They will evaluate her in February after doing another 24 hour holter monitor and ECG.

Obviously we are very relieved at this point. First and foremost, she is apnea-free! The arrythmia is not a dangerous one, nor one that she can feel, and it will most likely outgrow itself within the year. So things are looking very good for little Taylor. She's a month old already and has grown from 5 lbs, 15 oz and 18.5" long to a very healthy 8 lbs, 10 oz and 20.5" long! Like her big sister, she's a good little sleeper, already doing 7 (occasionally 8) hour stretches through the night. Good job Miss Taylor! She seems to be kinda gassy, so she's a bit more fussy than Marissa was, but nothing overwhelming. Still sleeps a fair bit of the day, but when she's awake she is very alert.

Taylor's birth certificate

The bottle looks bigger than her!

Marissa is adjusting to being a big sister very well. She is very affectionate and is showering Taylor with millions of hugs and kisses, not sure how long this love affair will last but for now it's going strong! At any rate, she seems to be a happy big sister and even though 'gentle' is not part of her vocabulary, Taylor is holding up to it all just fine!

Tender kisses

A gentle pat on the tummy

"Help! She Won't stop crying!"

Can't get enough of her little sister

Endless kisses

Likes to help feed her too

Thank you so much for your phone calls, emails, visits, cards, gifts and even dinners - the support and encouragement we have had from our family and friends has been overwhelming and we appreciate it so very much.

Happy Halloween!

Home Sweet Home

Just a short one today, we are VERY happy to say that Taylor came home today, she was one full week clear of the not-breathing episodes and the doctors said she's ready to be home. We're very happy, a tad nervous, but we were much more comfortable bringing her home today after a couple extra nights in the hospital. Her monitors came off yesterday and Daddy gave her a bath last night when he went to visit. We got home early this afternoon with our beautiful bundle and she's doing great.

Getting ready to leave the NICU

Bundled in her carseat

Our completed family home together

Happy Mommy

Happy Daddy

So tiny in her playpen

Marissa is quite intrigued with her new little sister, every time you ask her to do anything she replies, "No, watch Taylor".

Well I guess I'd better go, Francis is trying to entertain Taylor with a movie in the "theatre room" and by the sounds of it she's less than impressed with his selection!

Taylor's Nursery

Almost Ready To Go!

Still no more episodes, 4.5 days clear now. She was cleared to come home tomorrow but we managed to put it off a couple more days. Although we really want Taylor home and for things to get back to normal, we're still pretty nervous about bringing her home. The doctor came and talked to me at length today and I did feel a little better afterwards, but they have agreed to give her a couple more days to help us feel a little more comfortable about being discharged, so Saturday should be the big day. They cannot obviously guarantee that she'll be free and clear of these episodes but they are able to say with confidence that they believe she is ready to go home, based on the tests she's had and the results they have shown, and all the things that were ruled out. She's got an appointment with the Pediatrician next Friday, and will start seeing her Cardiologist the following week. The Cardiologist will be putting another 24 hour monitor on Taylor the day before her appointment then she'll take it off at her appointment, read the results and we'll go from there. It's all so overwhelming, I'm looking forward to meeting her so that we can better understand the arrythmia that Taylor has, what it will mean for her, and where we go from here.

On The Right Track

Things are going well, Taylor hasn't forgotten to breathe since the last episode on Saturday morning, we're 3.5 days clear now. There needs to be a 5 day stretch before going home, so pending no more, they have slated a possible discharge of Thursday afternoon. I think Francis and I would both be a bit more comfortable waiting until the weekend, not sure if that's an option though. I'm working on a list of questions so that I can talk to the doctor tomorrow and get some reassurance, clarity and confidence around bringing her home. She's continuing to eat like a PIG, at least she knows how to do one thing right!! To borrow a phrase from a friend of my mom's, "I must be pumping ice cream" because she's already up to 6 pounds, 11 ounces. We're sure looking forward to having her come home and get settled into some normalcy, but in the meantime we're hanging in there. Will let you know how things go over the next couple of days.

Here eyes DO open once in a while!

Another Setback

Unfortunately Taylor had another apnea spell yesterday morning (she hadn't had one since Tuesday night). So we're at least another 5 days from bringing her home. She's doing well otherwise, she has a Pediatrician and a Cardiologist lined up for once she's discharged. She's feeding really well on pumped breastmilk and nursing when I'm there and she's gaining weight really nicely. She is now 6 pounds, 7 ounces (born at 5 pounds, 15 ounces).

Taylor is allowed to have visitors in the NICU as long as either Francis or myself is there and you don't have any of the following symptoms:
- rash/itch
- cough or runny nose, sore throat
- diarrhea and/or vomiting
- fever
- exposure to chickenpox, measles, rubella (German measles), pertussis (whooping cough), or mumps within the last 3 weeks

So if you want to come see her, just give either of us a call and we'll let you know when one of us is going to be there. We'll do our best to keep you all posted on how she's doing. Thanks to everyone for your nice emails and calls, it means alot to us.

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.

Mommy Love

So that's the scoop on the past 9 days. We are SO looking forward to bringing her home and settling down after this emotional time.