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Monday, 31 December 2001


It has been a few days and it is time for another quick update...

Isabel is still on oxygen, however it has been lowered from ten litres down to one!!! The wounds around her mouth and chin are healing well though Isabel still won't smile (I think she fears tearing her tender lips again).

Her pneumonia is slightly better, though her cough still bothers her. We will attempt some physiotherapy tomorrow to loosen some of the phlegm.

Much to my relief, she has regained her weight. Feedings have not yet resumed and therefore she is kept hydrated with sugar/sodium I.V.

They are wanting to administer two types of medicines: One is Ranitidine or Zantac to help lower the level of acidity in her stomach in order to protect the lining in the oesophagus and to prohibit reflux (throwing up). Side effects include constipation, nausea, headache, abdominal pain and sometimes fever, sore throat, yellowing of eyes or skin!!!! Oh yeah, where do I sign up? Just what my baby needs...more nausea. The other is Metoclopramide (also known as Reglan or Maxeran). This relieves nausea, vomiting and reflux. Okay, good enough. Side effects include: drowsiness, restlessness, constipation or diarrhea, and sometimes spasms of the neck, face or jaw or sudden uncontrolled movements of the arms, legs or eyes. YEAH, RIGHT!! I'm suppose to feel good about her not throwing up anymore, but take on muscular or possibly neurological disfunctions? For crying out loud people! Let's not create more problems!!!!

We are stumped and exhausted. Do we give her these things? Do we just give in to the medical system even though they will not answer me when I ask them "WHY IS HER DIGESTIVE SYSTEM SHUTTING DOWN????" Instead of an answer, I am given a list of drugs to give her. GRRRRRRRR!!!

Oh, here's another fun thing. I am seriously worried about the possibility of Candida being the major factor in all of this, I mean after all, her tongue is suddenly white with thrush, her digestive system is totally affected, her formula's first ingredient is sugar followed by syrups and other forms of sugar, anytime she's had a diaper rash, it has been fungal...etc... So I told the nurse today, "I want a blood test done to detect any Candida antibodies in Isabel." Well, the huff puff was incredible! "Why would you want to do that? She doesn't have Candida! Oh, they don't do that kind of test on children. Her blood cultures will detect if there's any foreign fungi or bacteria in her blood stream." Duh lady, candida IS always in our bodies, it's when there's an overwhelming amount that is dangerous!

Where do we go from here? We will consult with a Nutritionalist NOT A DIETITION and see if we can establish a diabetic formula or an anti-candida one. Perhaps we can heal Isabel through nutrition rather than some stupid formula. Maybe we can focus on caloric intake based on oils rather than sugar, maybe even vary the formula so it's more like eating normally. I don't know. Those meds just scream no to me.

At what point do we say, it is time to give the medicine? Where do we find the people to establish this team that I believe we need to figure out the best possible care for Isabel? When will it all make sense? And for crying out loud, why do I need to get a PhD. to feel like I will finally be heard and respected within those hospital walls?

We need a team. I will find each member one by one. A nutritionalist, a chiropractor, a pediatritian, a researcher, a healing touch specialist, homeopath, nurse and social worker. Maybe I will come across others. But I will build this team and we will work together within the medical network. We will know our resources and establish a plan of action. One that will bring healing and strength to a little girl who fights to live and be here with us. One that will understand her needs and provide to them. One that will be victorious!

I will not give up this fight because my heart screams to me that there is an answer. I will question until it is found. And whether it is what I want to discover or not, my heart will be peaceful knowing that I never stopped seeking and believing.

You are team members as well. You are the support, the love, the prayers that we need to sustain us. You are my friends, my family, my beloveds! (I think I just made up a word) Well, I guess this no longer qualifies as a "quick update." Love and light to all of you and bless you for your messages. They bring such strength to me.

Saturday, 29 December 2001

Officially admitted to Children's Hospital

It is now nearly one in the morning and once again I have just walked home to silence. It has been a long day and only now have James and I walked in from our stay in the hospital.

We nearly lost our little Isabel. When we got to the hospital, her oxygen saturation was at 84% and normally it is anywhere between 98-100. Her heart was beating so rapidly in attempting to work so hard and her breathing was quick and shallow. She could not even move or complain. So as we speak, Isabel is on oxygen and may very well be for some time.

X-rays showed fluid in the lungs which we were concerned about because of her constant vomiting and choking. It is now confirmed that she has pneumonia and is on antibiotics. X-rays of the gut also showed air in large portions throughout her intestines but none near the large intestine. There is concern of obstruction and further investigation is in store for tomorrow.

She has lost two pounds and therefore weighs only fourteen pounds, ten ounces. It has been an endless battle to get her to sixteen pounds. I cannot imagine the challenge if we have just set ourselves back another year.

The doctors were so much better!!!! We had only two instead of six! The senior resident doctor was a young, compassionate woman who listened to my flow of questions, concerns and goal as Isabel's parents. She explained what she saw in the X-rays and talked to us about possible course of action. We told her we wanted a different pediatrician and found one within Children's Clinic. We will meet him tomorrow. I pray God has led us to this one for a reason...

There was talk of the possiblity of a ventilator and of possible surgery to the gut, but nothing has furthered that concern.

Isabel is finally sleeping peacefully without waking from vomiting, from pain, fatigue nor fear. She rests as angels dance above her and as your prayers settle into her.

I miss her. I love her so much. She is my little Isabel Faith and I am grateful for a much more positive experience with Children's Hospital.

May dreams dance in her head and the moon sing in my absence. She will rest peacefully and so will I knowing that she is safe.

Goodnight, my friends. May you also rest peacefully in dreams of life and laughter, and sunshine to fill the rest of your days. I will keep you posted...

Friday, 28 December 2001

Losing battle

Beloved family and friends,

I am tired. I am worn. I am beginning to feel as though I am fighting a losing battle. Isabel is doing worse than she ever has before.

It began a week after she came home from the hospital. She had a little throw up here, now and again. As the days passed, it became more frequent. We spent $250 on Homeopathic meds and a cleansing program for Isabel over the next two months.

Christmas day, Isabel tolerated her last diluted feeding at 2:00 pm. From then onwards, she would vomit dry heaves, mucus, bile every couple of minutes for the next three days. The acid from her stomach is burning her skin and the constant vomiting is keeping her from sleeping.

James and I have been working around the clock trying to give her several mL's of water every half hour to watch her throw it up only seconds later.

I am so scared. I have faxed a desperate message for help to several paediatricians and I have heard back from none of them. We have been communicating with our Homeopath every couple of hours and they are the only ones to date who have questioned the excess gas she is suddenly producing.

Isabel is gaunt and incredibly frail. I will be taking her back to the hospital in the next hour. First, I will print a medical history document so that the handful of doctors who come in will not ask the same stupid questions. I will also need to print something about Isabel's emotional needs, likes and dislikes in the event that I am unable to be with her at some point.

We don't know what more to do, how much longer to fight, whom to seek and when to finally accept that God's Will may very well be that she leave us.

I held her against my skin in a hot bath a few hours ago and sang to her as her frantic eyes kept moving back and forth. I sang and cried for it felt as though my baby was dying in my arms. "Ave Maria" filled our ears as I poured my heart out in prayer through song. This is the song I sang with my sisters when grandma was dying only days before they took Isabel from my womb. This is the song my sisters and I sang when our uncle unexpectedly drowned in the Saskatchewan River nearly two years ago. And this is the song I will sing if it is time to let her go.

Pray for our strength for I am weak. Pray for our Isabel, that God's Will be honoured and that life be breathed into her for as long as we can ask. Pray that perhaps we discover something new this time and can turn this around quickly. Pray for these tears to stop, for I feel as though I am drowning in this heartache. And at last, pray for our Melina. She is so innocent in all of this whirlwind and I fear the effects of this turmoil.

I do not know what more to ask. Perhaps only that the sound of Isabel fill our ears for the rest of our lives, whether present or only in our hearts. God be with us through this journey.


Monday, 10 December 2001

At last!

It is with a sigh of relief and a smile on my face that I sit in this chair and once again reach out to all of you. Life has finally settled and I am no longer dizzy from the intensity of this last week. Isabel is upstairs at this very moment, smiling and cooing as Melina sits by her side.

God has blessed us far too much for me to ever be able to doubt the power of prayer. Can you all believe that since the second day in the Hospital, she has not even spit up, let alone throw up ANY of her feedings? She has never gone this long on full strength formula without vomiting! Your prayers embrace our little Isabel and there is a peace surrounding her that has carried her through this ordeal.

I have had several moments of utter disgust in our "Children's Hospital." Just the other day, Isabel's I.V alarm was going off while flashing OCC (occlusion). I was holding Isabel but managed to find the kink in the I.V tube; however, the alarm must be placed on "hold" and then on "resume" for the alarm to register that there is no longer an occlusion. So the nurse came in and started fiddling with the tube. I said, "I already fixed it, you just need to resume it." Well, she continued with her fiddling and managed to clamp the tube within the compartment that threads through the machine. Needless to say, the alarm kept going off. I let her do her thing and finally, I said, "the tube is clamped on the side rather than coming out through the portal underneath." Finally, the situation was resolved; however, my faith in the medical system was severely wounded.

Not to mention the time a huge air bubble was in Isabel's I.V. I called the nurse and they had to remove the air AND they didn't clamp the needle going into Isabel's foot, so she bled all over the bed. GRRRRRRRR!!!!!

Also, her feeding pump was sounding off its alarm and this other nurse couldn't figure out why. I said, "it looks as though you've filled the compartment with too much formula." She said, "no, that's how it’s supposed to be." Finally, after many tries, she went and found the head nurse who came in and said, "Oh, you've got too much formula in the compartment." For the love of Pete! Are they pulling people off the streets and handing them Nursing Degrees or what?

I've shown up at the hospital with Isabel screaming all alone in the crib! (Sigh) I could go on and on and on. After these sequences of events, I asked what needed to happen in order for Isabel to come home. They wanted to see her go from a quarter strength feed, to a half and at last to a full strength at a rate of 40mL/hour. So I spoke with the nutritionalist and established a feeding routine. I showed it to the doctor and I said, "Is there any reason I can't take her home and work her up to these settings in a place where I KNOW she will be taken care of?" They were reluctant but I assured them that I would call the doctor should she start throwing up again.

And so, ladies and gentlemen, the medical team has learned not to mess with this Mama Bear. I bite, and I bite hard if my baby is not completely and totally loved and nurtured. I am her only voice and I promise that it will be loud and clear! So, yesterday, I brought my baby home where she belongs and she has done beautifully since.

But this journey does not end with only this week’s memories to fill our minds. We are left, also with the strains of crisis between husband and wife and finding a common ground with which we can find each other and stay strong. WE are left with a six year old who grieved over her missing sister, and who played with Isabel's toys and watched her baby videos as a coping mechanism. WE are left with a house in disorder and circle under our eyes. But we walk away triumphantly knowing that we can fall, and we can fall hard, but we will always bounce back and be all the more whole.

And never could we proclaim this strength had there not been a team behind us, an army ready to fight and protect us, a sea of love encouraging us with every step we take, and an endless sky of prayer reaching out to heaven and sending it down into our hearts. I want to thank you all once more for being a part of Isabel's life story, for being a part of ours. You reach me and you fill me. How can I ever thank you enough for the power of your faith and love?

God bless you all and know that this family will wake up tomorrow morning and be whole again. I will be whole again. My family. My life. Amen.

P.S. Your prayers have also reached our Victoria for yesterday, she walked out of that hospital with her four younger siblings and her mother by her side. How can anyone doubt after such incredible display of Divine intervention?

Thursday, 6 December 2001

God bless you all!

I cannot begin to describe the feeling of calmness that has settled over me as I have read each one of your loving messages. Thank you for the peace in my heart. It is as though a thousand hands are reaching out to me and I cannot fall amidst their presence. It truly is a heavenly touch that has renewed my energy, cleared my mind and settled my soul.

I am almost tempted to paste and send you a collage of your love and support for it truly is breathtaking. Even in the midst of your own lives, you have reached mine. I pray that as you all take in your own trials and tribulations, a blanket of God's blessings fall upon you and remind you always of the gratitude in my heart. For I cannot even begin to explain the surrealness of this touch of peace. I can breathe.

Let me tell you what your prayers and your tears have done...

Isabel is stable and miraculously, she slept through the night! She is filling her diapers and dehydration is no longer a concern. Her heart rate has dropped down to normal and her electolytes are back to normal as well. We tried to feed her today, but she threw it all we will try again tomorrow.

We are fighting for our concerns to be heard, amidst them is the fear of medicating Isabel rather than addressing the issue. Her body is rejecting the simplest formula out there, what does this mean? We have left a message with Dr.Nielson who, as some of you know, is a Homeopathe who has made significant changes in peoples' lives. We hope to have a voice through her that will look at alternatives to Isabel's intolerance rather than schedule an operation for a fundaplacation (an invasive procedure where they tighten the base of the aesophagus (sp?) to prevent reflux).

Isabel is a fighter. She always has been. She would not be here today if she wasn't. She looked at me today with such appreciation, and I know her little spirit can conquer this. We will figure this out and we will let her be free. No meds, no operations, no nothing that God didn't intend to have in her! We pray that it is His Will that she thrive in this manner.

Victoria is the twelve year old girl in the bed next to Isabel. She has graciously taken on the role of honorary big sister and is quite protective of our Isabel. It has broken my heart to hear of her story and how she has been in the hospital for most of her life. Her kidneys are failing and she is on morphine for the pain. I ask that you include her in your prayers for I spoke with her and loved her and nearly took her on my lap to hold her. Her eyes are old and her body looks worn. God bless Victoria and the journey of her story.

All in all, the house is quiet yet again tonight, but my heart is peaceful knowing that our Isabel sleeps with her little clown next to her and her "Little Bear" videos in the VCR ready when she is... She will not be coming home until she can keep food in her, so let us pray for her clever little body, and for the right questions to lead us to the right answers.

Thank you for the sound of angels that surround me. I know it is your prayers, and I feel safe. God bless you all!

Wednesday, 5 December 2001

Desperate for prayers

My beloved family and friends,

It is with a heavy heart and circles under my eyes that I write to you. Tonight has been a long night and only now have we come home to a quiet house. A house much too quiet for me to bear.

Isabel was brought into Children's Emergency today. I'd been feeling concerned about her increasing intolerance for her feedings and the growing irritability around it. The last few days, we've not managed to keep anything in her. I have felt frustrated, angry, and so incredibly afraid. So, off to the pediatrician we went...

James met me and the girls at the Dr.'s office at 5:00pm because I had to work at 6:15 and would need to be dropped off immediately after the appointment. However, plans changed when the doctor said the following: "My professional and medical advice is that Isabel is seriously dehydrated and needs immediate medical intervention through IV. Now, it would also be alright if you chose not to have medical intervention. Do you understand me? No more needles, no more drugs. But know that she might not make it til morning without an IV. It is your choice."

Well folks, there is nothing in life to prepare any mother or father with the decision of letting your child die or do everything in your power to keep them here.

I looked at her. She'd been crying for nearly forty eight hours straight with few naps in between. But she was here with me. She was still here and she was still my little Isabel and I don't care about the sleepless nights and the crying spells of just being tired of it all! I don't care about the permanent stains in the carpet from her throwing up her feedings all the time. I don't care about the pains in my back from carrying her around! These are nothing and mean nothing as long as I still have Isabel.

To look at her and imagine her gone was too unbearable and the tears wouldn't stop. My baby! I may have had my moments of wishing it could all just end, but my God, when presented with the actual scenario, it is the last thing you can bear to think of. So, without delay, we brought her to emergency.

Her heart was beating very rapidly. They took blood, inserted an IV, took a urine sample and finally after four hours of questions and tests, they brought her up to a room and let her sleep.

So my friends, my family, I need you now and the glorious support of prayer. For my little Isabel is weak and my heart breaks sitting here while she sleeps in a quiet room on the fifth floor of Children's hospital. But I will think of her little face and the moonlight shining down on her and hope that the moon will sing her lullabies while I am away. And knowing that your prayers will blanket her and protect her, will keep me strong and grateful.

She will be there for at least forty eight hours. So let us count the minutes until this house is loud with Isabel noises, whether pleasant or annoying! Because at least it will mean she is here. Thank you and God bless you all for being my strength. Our world is so blessed for having your support and never does a day go by where I do not give thanks for it.

And may the moon shine down on you as I send this all to you. Good night.

P.S. I just want to give thanks to Linda and Moe for having taken care of our worried Melina during this unexpected time. She was scared and sad, but Grandma's love kept her safe. Thank you so much, Linda and Moe. Thank you for loving our special Melina!