Little Ladybug Hugs

Less than 12 hours to go until the long-awaited surgery. My ladybug’s hemoglobin has been holding strong, she is such a trooper for a wee baby. God willing they will find the cause of the GI bleed tomorrow – fix it, and finally insert a G-tube (tube directly into her tummy for feeding) and a Portacath (permanent central venus line under the skin to make iv lines and blood drawings possible).

Throughout our stay at the hospital I have had the opportunity to meet many families. The thing about meeting people here is we all have one thing for certain in common – our children are all ill. Whether it be seizures, leukemia, recovering from a surgery, or in our case a whole lot of unknowns we can all relate in some way or another.

Being in such an environment has allowed me to put our journey into perspective.

While I’m putting my 9 month old daughters hair in pig-tails, wondering if her hemoglobin levels will plummet again, less than 200 yards away in the oncology ward a daddy is quietly picking his daughter’s hair off her pillow so it won’t upset her when she wakes up.

It really rings true the adage that no matter how hard you think you may have it – there are always others out there who have it worse.

Being in the hospital for the time that we have, has been both a blessing and a curse. The curse is rather obvious. I’d prefer if my daughter were home, and completely healthy as opposed to being in the stuffy hospital room in pain. However, the blessing is that the parents like myself can build support groups with each other which could lead to life long bonds.

It’s all about perspective.

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Through out everything going on these past 3 weeks my one crutch has been the make shift Starbucks on the first floor at MAC. Now that I’m able to use the underground parking I can pick up a grande Chai Latte on the way up to the children’s ward.

I was just coming around the last bend before my daughter’s room – took my first chai latte sip of the day and was intercepted by a porter pushing my daughters crib out of her room. We were off to radiology for the barium x-ray, not before putting in the NG tube that my little mastermind had intricately worked away the super strong tegaderm tape on and had finally managed to pull out just before I arrived that morning.
The barium x-ray was again a very interesting procedure to watch, once it was put through the NG tube we had to keep turning LB onto her right side to help the barium move through the intestines.

That being said it also meant more radiation exposure to this already delicate little body.

Only about 1/2 hour into the procedure a charge nurse from the ward came into the x-ray room with a bag of O-Neg blood in her hand. Here we go again. We just can’t break out of this endless cycle.

My little ladybug’s hemoglobin had plummited down to 74 and she had to be transfused for the 4th time. How much more of this could her body handle?

Once the x-ray was complete we returned to the room and were followed in by her team of doctors. They were unable to see anything that looked unusual or would warrant concern. An ECG Holter Moniter was put on this afternoon as well and will monitor her heart for 24 hrs so the Cardiologists can get a better understanding of the arrhythmia.

There is still no clear set reason or cause for the GI bleeding, but, they were able to tell me with the utmost of confidence what wasn’t causing it. At this point I don’t think I could even attempt to pinpoint how I was feeling. Tired, frustrated, sad, hopeless? There isn’t a word that could ever describe ones feelings after all of this.

I want them to find the cause of the GI bleed and stop it, I want them to diagnose whatever syndrome or disorder my daughter may have and if possible help treat it, and I want them to give me answers!

I’ve been patient, I’ve listened and waited while they have exhausted every test availble to try and solve this mystery. I know all the Doctors and Nurses are doing as much as her little body will allow them to do, and I know that they are all nearly as frustrated as I.

We are now at the point where every possible non-invasive test has been done and if the GI bleed still progresses my beautiful little ladybug will be taken to the OR for exploratory surgery. All we can do is wait and see.

I’m definitely invisioning a relaxing vacation as soon as my little princess is 100% healthy and out of the hospital.

It was a rather quiet day at the hospital.  Most of the tests were postponed until tomorrow, hemoglobin levels seemed to play the yo-yo game, but still managed to stay above 80. Anything less requires another transfusion.

As I’m sitting here winding down from the day, I’ve quickly realised that my body is exhausted.  My mind, however, seems to be trapped in a chaotic labyrinth of the unknown medical world.  I’m still trying to make sense of everything that has taken over our lives these past three weeks.    I know one day we will be able to figure out which syndrome, disorder or whatever, that can tie everything together.

Thank goodness for my two fantastic co-workers who rescued me from the land of hypsarrhthmia, brovics and diaper examinations today. These two ladies not only brought me lunch, but for an hour took me away from my hectic day so I could unwind.  Can you believe that I actually thoroughly enjoyed talking about work and everything that had been going on since I’ve been gone.  Crazy I know.  🙂

My hubby’s company has also been so supportive through out everything.  Esepcially the owner and his wife.   Even throughout my miscarriages they always let me know that they were praying for us and if we ever needed anything all we had to do was ask.

In fact the other day I came home and saw a beautiful bag sitting on our front porch with a card signed from all the office employees, in the bag the bag was a musical teddy bear and some clothes for our little princess.

This is what makes a company exceptional – the way they treat their employees throughout the good and bad times.  Dropping by the hospital to bring my lunch and visit for a bit, just so I can escape, if only for a few minutes.  Sending a beautiful care package with an adorable wind up teddy bear, and calling just to let us know that they are thinking and praying for our daughter.  These are the things that help us get through the tough times.

Thank you KC for all of your support, kind thoughts, and prayers throughout everything.

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In the past two days my little LB has been to see nuclear medicine to have radioactive potion (itsy bitsy trace amounts) put into her iv line so they could tag the red blood cells. Once they were tagged images were taken of all the red blood cells in her tummy with the hopes it would show an area where there was a cluster of the cells together. Even though it sounds a little crazy mad scientist it was a truly fascinating procedure to watch. Oh and the results were normal.

This past afternoon she was put under a general anaesthetic and had a colonoscopy. It actually went great and there were no complications. With the tiny bit they learned from this test, tomorrow they will do a different one. Barium will be put through my daughters NG tube and a series of x-rays will follow it through her tummy, again with the hopes that it might pick up on an area where the bleeding could have or is taking place.

For the most part, today her hemoglobin levels have been staying rather steady, however I just got a call from her nurse that it has dropped again. I guess we’ll see what the morning levels are. If they drop again then it means the bleed didn’t clot and a 4th transfusion will be given.

Neurologically, the mystery is slowly unfolding. As I said before the first EEG showed some abnormalities which is why the video EEG was done on Monday. Today I found out that the abnormality was a hypsarrhythmia EEG which is abnormal high waves and spikes on the graph. It is indicative of Infantile Spasms. It’s a very chaotic and disorganized brain wave behaviour with no recognizable pattern. Each case is individual so it’s difficult to make a prognosis. LB’s is a very mild form, but, it will still be treated with meds to prevent severe epilepsy in the future. The little princess will be followed closely by neurology and will have follow-up EEG’s to monitor how well the meds are working. An MRI will also be done in the next couple weeks and will give the docs a better idea of what’s going on in her precious little body.

As for myself – I’ve been a rock this entire time. After all – If I’m strong and keep positive and calm my daughter will pick up on it.

This was the case until I spoke with neurology today. The hubby and I always said we can deal with any physical obstacles that may come up, however I always hoped that neurologically our daughter would be like every other child. A child that grows up to live a ‘normal’ life. I always had this dream that she would go to university, travel the world, become the youngest female CEO of a huge corporation, get married, and have lots of little babies for me to spoil. (doesn’t even have to be in that order) The type of dream that so many parents take for granted every day. No matter what, some or all could be possible

We will never know for sure what the future will hold for our princess neurologically. Only time will tell.

All we can do is keep our love and our hope strong.

Hope sees the invisible, feels the intangible, and achieves the impossible

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For those of you who have large SUV’s, trucks or have ever needed to go to the emergency room and had to park in the top lot at McMaster Hospital you know how expensive it can be.

When my daughter was first-born and in the NICU we could actually buy a 2 week parking pass for that lot – which believe me made a world of difference.  The most recent hospitalization of my daughter has not only weighed heavily on my heart but it has also weighed heavily on my wallet.  The company that owns the parking area has since changed the above ground lot to “Premium” parking.  Anything more than a couple of hours costs $20.00 and you can’t leave the lot or it starts all over again.  Let’s do the math – we’ve been in the hospital thus far for two weeks, for myself alone it has cost me $280.00 for TWO WEEKS!

My husband attempted several times to speak to the parking manager about our situation, when the manager was finally available his only response was I can’t do anything.  The suggested option was to park in an off site lot, wait for a shuttle bus that would drop you off at the back of the University campus and walk to the hospital.  As parents of a child in the ICU this was NOT and option.

I understand that everyone must make money, and perhaps the owner of these lots had a very good reason for taking away the above ground parking pass.  However, I wonder if when making this decision they took into account the families of all the sick children in the hospital who are having to worry about paying a fortune for parking on top of everything else they are already going through.

We did eventually come up with a way around having to park off site.  My husband – being the crafty man he is ended up putting over 300 lbs of sand bags in our SUV to lower it just enough to fit in the underground parking where the cost for two weeks of was around $54.00 (less than 3 days parking in the “premium” lot)

The first 8 months of my princess’ life were very similar to my pregnancy. My darling was in the NICU for a week after she was born, and was kept in for more testing. She had x-rays and ultrasounds from head to toe. We saw Genetics, Endocrinology, Orthopaedic surgeons and the list goes on and on. Aside from the short femurs everything came back normal.

At 1.5 months the little munchkin became extremely irritable and began to refuse feeds. Turns out she developed acid reflux. For the next 7 months she would be fed primarily via an NG (Naso-gastric) tube and began a regimented intake of Ranitidine and Domperidone, meds to help control the acid.

Shortly after genetics wanted to run another test for Achondroplasia and Pseudo Achondroplasia. Again they were fairly certain that she would have one of these two forms of dwarfism. Alas – the results came back normal.

6 months was the first attempt to finally be rid of the pain in the ass NG and have a G-tube put in – a feeding tube which goes directly into the tummy. Around an hour after she went in, the surgeon came out and explained that they were unable to do the procedure. No one on the team was able to find a vein to start an IV line. Which meant she couldn’t be sedated. To say that I was angry was a HUGE understatement. How was it that staff in a hospital trying to build up a reputation for being one of the best childrens hospitals in the province couldn’t find a single good vein in my daughter. I even tried having docs at Sick Kids in Toronto attempt the procedure – about a week later I heard from my family doctor that they declined to do the surgery because our local hospital should have been able to do it.

I would soon learn that our little ladybug would continue to hide her veins.

The most recent hospitalization was at 8.5 months. (We are still here) It took 7 teams to find a vein for an IV line. Finally the anaestheticians were succesful. That victory was rather short-lived though. The line was no longer usable (interstitial) after a couple of days. That’s when surgery jumped in to put a temporary broviac catheter line in her femural area.

This most recent trip was brought on because the little one was breathing very rapidly. What started off as a possible infection soon grew a lot worse. Words were openly tossed around like, septic, arrythemia, tachycardia. It really didn’t take long for me to completely understand this new language. My daughter had a very irregular heart beat, and at times her heart rate would jump to well over 200 beats per minute. We still have no idea where the mystery infection was after a week of an anitbiotic cocktail the fever finally broke and there was no trace of the infection.

Then all heck broke loose. My typically calm, sweet baby became as my husband would call her – Linda Blair. She was arching her back, twisting around and screaming in pain. Our fantastic nurse at the time immediately stopped the feeds. Shortly after I noticed blood in her stool. Then her hemoglobin levels dropped drastically and the first blood transfusion was given.

A couple more transfusions and a week in the ICU later there is still found cause for the bleeding. Which brings us to today.

At the moment I’m gazing at my little princess who is having a video EEG and has a hundred wires attached to her tiny little head. Holding my breath, ready to push the red button to make a note every time there is the slightest hint of unusual eye movement that could be indicative of seizure like activity.

At this point more tests are to be ordered to try to find the source of the bleeding and we will likely be here for a few more weeks.

Like the title says – at this point all we can do is Watch & Wait.

When I decided to begin a blog about my daughter and the world around her, the biggest debate in my mind was whether or not to give a history of how she became our miracle or begin where we are now.  Truth be told, there is no way one could understand how special my little ladybug is without going back and sharing our entire journey.

I had recently moved back from Turkey and was very happy to plant some roots and start a family with the man I love.  It was such an exciting time, but was soon overshadowed with some heartache.  My first pregnancy was welcomed with open arms. We were both thrilled and ready for the new adventure.  After traveling back to Istanbul to oversee the shipment of all my belongings back to Canada I met up with my hubby in Ireland to see where he grew up and meet his family.  The excitement of everything was short-lived when I miscarried a few weeks after.  It was very difficult to deal with and unfortunately wouldn’t be the first.  I miscarried again at 12 weeks later on that year.

At that point I grew worried that we couldn’t have kids and even explored adoption. However just when I was at my lowest those two pink lines appeared yet again.  Feeling that the third time would be the charm I cut out everything that could potentially be harmful – including chocolate and Starbucks Soy Chai Lattes. (My favourite)

Around my 12th week I was overly tired and just wasn’t feeling the greatest.  With my history I proceeded to the ER for an ultrasound.  I was immediately relieved when I saw this tiny little arm wave back and forth.  I could relax – everything appeared the way it should to me.  The doctor came back into the room and closed the door behind her.  She then took a deep breath and proceed to tell us that the baby had a high Nuchal Fold (thickness of neck that is indicative of a chromosome, genetic or cardiac anomaly) and probably wouldn’t survive the next few days.  I remember staring at the doctor repeating over and over that I saw the baby moving – I know it is okay.  However, she was adamant it had a chromosomal defect and wouldn’t survive.

I could do nothing but cry, waiting out every day for the “impending” loss of yet another child.

The next morning I crawled out of bed, pushed all the tear soaked tissues to the floor and dragged my ass to the living room with the hopes that something on TV would take my mind away to a different place.  BUT…..it was early Sunday morning –  not even Coronation Street was on.  As I was flipping through the channels I put the remote down and decided to surf the web.  While I was waiting for the dial-up connection my attention was brought to the TV.  I had randomly stopped on The Hour of Power – a weekly church service based somewhere in California. That is when I first saw my inspiration.  (At the moment I don’t have permission to use her name so for now she will be known as “my inspiration”  because she was and is just that.)  She was speaking of how there were chromosomal defects with a baby that she had miscarried, and at the time they were given the option of terminating the pregnancy.  What she said after that filled my heart with such warmth and peace, I will never forget it.  ” If God wanted to do a miracle to raise this baby up, we would take it, and if God wanted to take this baby home to heaven, than that would be okay.”  A.P. My inspiration.   For those of you who know me I’m not a religious person, but am very spiritual.

I was referred to the prenatal diagnosis clinic at a local hospital where I had CVS test to see if there were any chromosomal abnormalities in our baby.  Every week that passed gave a little more hope but I wouldn’t allow myself to feel it.  We even found out early that the tiny little life inside me was a girl. There was something different about this baby girl but it was a mystery as to what.  Every visit to the clinic was the same as before:  The tests done the previous visit have all come back negative/normal, but…. perhaps it could be this other devastating problem/syndrome.  I was also repeatedly told that we could always terminate the pregnancy, even though the previous appointments my hubby and I had been clear it wasn’t what we wanted.

I was around 20 weeks when I was sent to Sick Kids Hospital in Toronto for an Echocardiogram and MRI to look at the baby’s heart.  After the MRI the doctor called me in to show me the images and said that there was a small anomaly but most people have it and my baby’s heart was structurally perfect.  He told me to take a deep breath, exhale and enjoy the rest of my pregnancy.

At this point the only thing the doctors could say for sure was that my baby girl had short femurs.  Which wasn’t a huge surprise as all the women on my hubby’s maternal side were rather petite.

For the first time since I saw those two pink lines I was able to truly be excited for the pregnancy.  After our trip to see family in Nova Scotia we decided to share the fantastic news with everyone.

Aside from the water retention, and the inability to tie my own shoes the last trimester went great.

My water broke 2 days before my due date (Dec 3/09).  I dilated to 9cm then our little ladybug decided she needed to have a grand entrance.

I had a C-Section on December 3, 2009 and our little princess was born @ 03:56, weighing 6 lbs 10 oz.  (Coincidentally the same day as her Auntie Sarah’s birthday)