3 years.

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My daughter Lily was born still.

That’s what would have been my statement had we waited any longer. She was born blue and was resuscitated; because of her beginning without oxygen she suffered brain stem damage, she was frozen for 3 days to help heal her brain damage, the first time I held my baby girl she was 4 days old. But she was alive so I was grateful.

Weeks passed with so many tests, all with a negative conclusion and after having a feeding tube surgically placed into her gastro intestine we were able to take her home. What gets me is that even though they did 3 MRI’s and multiple other scans, they missed what would eventually kill her. That was her trachea. They were so close too, they found the holes in her heart, they found the valve that pumped the wrong way, all of these would need surgeries to be fixed but she needed to be bigger and stronger to endure them, had they looked an inch higher they would have seen her abnormal trachea.

The night Lily stopped breathing and I performed CPR on her plays out as a nightmare in my memory, for the longest time I wanted to move because every time I looked at that spot on the  floor where she lay, my heart stopped, but then we replaced the carpets with hardwood and I was sad that that was now gone too, so I knew I couldn’t leave the one place she had been. When they found out about Lilys trachea, the doctor phoned and told me she would need a tracheotomy to live- that’s a hole in her throat to breathe, he said she would never have a good life, would never speak, would never taste anything and would have a shortened lifespan because of it. That surgery was on top of the other 4 heart surgeries she needed. This one would now be 1rst though. He said I will do it if you tell me to but even on a healthy baby the chance of survival is slim. What the fuck do you say to that!? We had company downstairs that day, I didn’t go back down.

We went back to the hospital 1rst thing the next day probably our 100th drive then. I suffered from ptsd every time I got into the car after she died. 4 days later we signed a do not resuscitate order, they took out her breathing tube and we held her until she died 30 minutes later at 4:55 pm on February 18 2012. I am forever haunted by this. What if we did the surgeries? Most likely she wouldn’t have died in our arms but on a table. What if we accepted the transfer to Canuck Place? We probably would have had a nicer end of her life together as a family. What if she was born still? None of these traumatizing experiences would have happened, we would have still grieved but differently I imagine. The hardest, what if she continued to breathe, what if she was that 5% that survived.

So as life goes on, as we try to understand the why’s of it all, we want to grow, we hope to learn, we try to accept, we continue to live. We chose to remember.

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X-rays….optional?

I have a secret, well, a secret `conspiracy theory` that I think may have been the cause of my daughter Lily’s birth defects and maybe eventual death.

You see, in Late February 2011 I had multiple x-rays done on my left leg where I have a titanium rod attached to my femur that was broken in 3 places back in 2001 in a car crash. It had been causing me agonizing pain lately and to the doctors orders the only way to see any possible shift or reason for that pain was x-rays.

So off I went to the imaging office- nicer name than the dark cement room where the employees stand behind a protective wall whilst you are filled with ionizing radiation … but anyway. So, I kept adjusting the lead apron to cover my lower abdomen the sacred home of my ovaries and the nurse kept coming in and yanking it back, I actually argued with her that they were to be x-raying my femur not my hip, and that part of my body should not be exposed. She said the doctor wanted the hip, I had my then 2 and 4 year olds alone in the waiting room, so I said fine just get it over with, this was the last of 4 x-rays she had already taken, I remember wanting to cry, feeling like I should have just walked out, the doctor would have been able to see enough with the first 3 x-rays.

You see, a month later I was pregnant with my Lily. My first baby girl. I never thought about that x-ray again.

Until 10 months later, when we were being told our daughter had 3 heart defects- congenital heart disease its called- that’s common right? yes and no.

We went home after a few weeks in the NICU being told that in a few years we’d be back to check on the holes in Lily’s heart to see if they grew and would need surgery.

We went home but only to return to the hospital one horrific night two weeks later because Lily had stopped breathing. After a week of MRI’s and ironically more x-rays  but on my tiny baby girl this time, they found she had another defect one that made it impossible to breathe. Her windpipe was 1/4 of the size of a normal windpipe which meant she needed a tracheotomy- a hole cut in her throat for her to breathe. That combined with the g-tube that was put into her stomach at 4 weeks of life for her to feed would give her a really hard and frankly boring life. In a wheelchair, hooked up to a machine that puts food directly into her gastro intestine, breathing through a machine through a hole in her throat. God how I was so overwhelmed with what life taking care of a disabled child was about to become.

The doctor pulled us aside and said you have to think of the quality of life she will have- the short answer- not good. he insisted if we asked him to he would have done the surgeries the next day but being that our little wee girl was not doing very good already her chance of making it out of surgery was slim- See ideally a healthy baby would be what they want to operate on especially these very high risk surgeries as the ones she needed.

So we sat with our angel- devastated. I held her as they took out her breathing tube and never began to breathe on her own. Of course in my heart all I was praying for was a miracle- that they would take it out and voila- she`d be that 1% miracle story they have plastered all over the hospital walls of babies who overcame. she`d breathe. on her own. and we`d get to take her home. No that didn’t happen. she died, and to this day I secretly think it has something to do with the x-rays on my hip and femur that left my ovaries exposed to the radiation 4x that had something to do with somehow affecting the egg that became implanted in my womb that later affected the growth of the beautiful little girl that was inside it.

Here a very interesting article on Points to Consider Before Taking Another X-Ray

http://drbenkim.com/articles-xrays.html

`For decades, the scientific community has known that x-rays cause a variety of mutations.

rays are known to cause instability in our genetic material, which is usually the central characteristic of most aggressive cancers.There is no risk-free dose of x-rays.

Even the weakest doses of x-rays can cause cellular damage that cannot be repaired.

There is strong epidemiological evidence to support the contention that x-rays can contribute to the development of every type of human cancer.

There is strong evidence to support the contention that x-rays are a significant cause of ischemic heart disease.`

 

 

And this from the Health & Physics society.

 `Most diagnostic procedures expose the embryo to less than 50 mSv.1 This level of radiation exposure will not increase reproductive risks (either birth defects or miscarriage). According to published information, the reported dose of radiation to result in an increased incidence of birth defects or miscarriage is above 200 mSv. 

Another important consideration is the stage of pregnancy in which the radiation exposure occurred:

In the first two weeks post conception or the second two weeks from the last menstrual period, the embryo is very resistant to the malforming effects of x rays. The embryo is, however, sensitive to the lethal effects of x rays, although doses much higher than 50 mSv are necessary to cause a miscarriage.`

To read more follow link below.

https://hps.org/hpspublications/articles/pregnancyandradiationexposureinfosheet.html

That doesn’t sound like it proves my point- I know- unless you add together the fact that I had 4x-rays that day not  just one and the timing which was in the two weeks from my last menstrual period .

Anyone that goes through the terribly tragic and traumatizing ordeal of loosing a child knows you search your brain for a reason- why?

I was, am a very healthy, active person, why did my baby grow so wrong inside me! Could it have been the radiation I was exposed to weeks earlier? This had made me incredibly weary of any and all x-rays, especially those on my children- i.e.- dental x-rays.

I told my dentist I was not going to be getting anymore x-rays and they very kindly offered me a sheet to sign saying I was denying the `doctors orders’ but it was all very easy.

However, when I told my children’s pediatric dentist that they will not be getting x-rays- whoa! I had three technicians attempt to persuade me, one even quite rudely commented that my son- who is 5 had had them every year until now ‘what’s the problem?’ I did not correct her that he had only been coming to the dentist for the last 2 years and had only had 1 but anyways- the fight I received in attempting to save my children from the exposure to radiation left me feeling angry and annoyed. Is it not my right to say no? Is it not my job to protect my children as I see fit?

You’d be amazed all the evidence you can find on-line as to what constant dental x-ray exposure does to you- here is just a couple of many I found

From  http://www.mnn.com/health/fitness-well-being/blogs/are-dental-x-rays-really-necessary

`A recent issue of Consumer Reports questions the need for yearly X-rays, particularly for children. It seems that many dentists have been re-evaluating the need for yearly X-rays in light of a study that was released in April that found that frequent dental X-rays, particularly in childhood, may be linked to an increased risk of brain tumors, or meningiomas, in adulthood.`

 

In WebMD Health News (By  ) http://www.webmd.com/brain/news/20120410/dental-x-rays-linked-brain-tumors

 
 

` Getting frequent dental X-rays appears to increase the risk for a commonly diagnosed brain tumor, a new study finds.

Exposure to ionizing radiation — the kind found in X-rays — is the biggest known environmental risk factor for largely non-malignant meningioma brain tumors. Routine dental X-rays are among the most common sources of radiation for most healthy people in the U.S.

The new study suggests that performing frequent X-rays may expose patients to unnecessary risk.`

 

The dentist still after I explained my reasons for no x-rays- because she still had to ask after the dental technicians apparently, still attempted in vain for me to re-consider saying it is imperative to be able to see the progress of the growth of the teeth. Fair enough I understand you want to do your job in the easiest way possible- but my only concern is with cavities and regular cleanings so as I said to them previously- should you not be able to see with your eyes any problem and there is a cause for concern we can revisit having to have an x-ray- she seemed happy with that. And then recommended my son go to an orthodontist that could do an full circular x-ray of his mouth and that way he`d only have the one done….I thanked her took the card and left.

Why Do We Suffer?

Image

Why do we suffer

Why?
Why do children suffer?
Why do babies die?
In the end their suffering is gone

Those left behind are the ones who suffer.
Why must we all suffer?

Why?

Caption: Is of my beautiful on the outside and so broken on the inside baby girl  -Lily Emma Olive Hall-  2 days before she died.

The short Life of Lily Emma Olive Hall

My sweet angel is

Forever loved and always missed

December 30 2011 – February 18 2012

My baby, my little girl, my third child, was born very early on Dec.30  she was born a undiagnosed frank breach  which means she came out bum first, she was folded like a pancake, she cut off her own airway by being folded in half. She also swallowed meconium and was deemed “flat” at birth, a nice? way of saying almost dead I guess. Was she flat because she was slowly dying the last three weeks she was trapped in my uterus? We found out my placenta was so badly deteriorated that she probably wasn’t getting anything from it. If we estimated my due date according to my last period (March 6) not the “dating ultrasound” she would have been almost four weeks late when she finally came, they might have induced me and saved the horror that her birth has traumatized me with.

In British Columbia they rely solely on the ultrasound. They had to resuscitated my baby girl, but first they had to clear her airway of meconium as the precious seconds without oxygen passed I screamed from my bed knowing that something was very wrong and at eight minutes of life they were performing CPR on my tiny 5lb baby, I was never most scared than at that moment, they did revive her, but without knowing how much time without oxygen to the brain, she was inevitably in trouble. I didn’t get to hold my baby until she was 4 days old.

Off we rushed to BC Children’s hospital, where we stayed for four weeks. In the next few months there was definitely more downs than ups, you could see the pain on her face even though she never cried, she endured too many tests for any baby, but in hindsight maybe not enough. After four weeks of driving back and forth every day, crying, worrying, and not knowing her future. Amazingly my Lily girl was able to come home on January 26th almost one month old, although she had to feed through a tube in her stomach and was behind a bit in her milestones, they started coming none the less and we were just ecstatic to have her home finally.

When she started to smile at me, it melted my heart.

I still worried everyday at what the future held but I had her in my arms at home. I regret never bathing her, I was too scared of that stupid tube in her stomach I washed her with a cloth, I regret not holding her more, or at least holding her during her tube feedings. Why was I so scared to touch my baby, I didn’t let myself get close because on another level I  think I knew she was not going to make it. Then one horrible night two weeks later February 11th, she turned blue, she stopped breathing, I performed CPR on my tiny baby girl, I screamed to call an ambulance, we were rushed once again to the hospital. The next morning she woke up seemingly better, I fed her, she smiled at me for what I know now as the last time she would ever look at me and smile, God if I only knew that would be the last time.

Then it happened again and again, she looked like she was choking, she turned blue, they took us back to Children where we were to find out after many more scans that Lily’s anatomy of her heart and windpipe were so rare and abnormal she could not breathe on her own, she would die if they took her tube out this time, that knowledge was devastating.

My baby girl was put on morphine to ease the pain because even with a breathing tube she had “episodes” were she couldn’t breathe, they were happening more and more frequently she was telling us she had to go.

We made the decision, its not really a decision as much as its torture to think there is a choice. But we decided to take her breathing tube out. We were told she would eventually die regardless. So we called her brothers to come and say goodbye, the song playing in the background of the hospital was ‘Home’ by Michael Bubble, weird I had never heard music in the hospital before, Lily wanted to go home. We played the same song for her at her funeral during the slide show one week after she died. My baby, Lily died in my arms at seven weeks of life on February 18th 2012. She was fifty two days old. I will never be the same. My heart will always ache. I am thankful for those smiles and the time she gave me at home. I realize it was a miracle that she lived past birth.

I will miss my Lily for the rest of my life. I will never be the same.

I will always wonder how old she would be today.