Posts Tagged ‘NICU’

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Thursday, October 17th, 2013

After a 135 day stay in the neonatal intensive care unit of McMaster Children’s Hospital – my tiny little Rachel is finally home!

For the first time today, I have my entire family under one roof – and I have no need to pack them all into a van and rush off somewhere.  And I can only describe this situation, as awesome!

As for the story of Rachel’s home coming, I’m a little too sleep-deprived (not to mention a little bit short on my amount of free time) to do a good job of it. Luckily for me, the story has been recounted by several others recently…

Not long after the girls were born, it was suggested to us (by many people), that the story of their birth was news-worthy, and that a lot of people may be interested in hearing about it.  The trouble with such tiny babies, is that you don’t want to ‘jump the gun’ on such a story. As I’ve mentioned before, in those early weeks, their survival (particularly Rachel’s) was by no means assured. The usual etiquette is apparently to wait until the baby has been discharged from hospital.  And so, with Rachel’s discharge date coming up fast, my wife contacted someone she knew from a local newspaper and asked if the girls birth was something they’d be interested in doing.  It was.

The Monday before discharge (Thanksgiving here in Canada), a reporter from the St. Catharines Standard came to the hospital to interview us, along with someone from from the hospitals public relations office.  The following day, the  public relations person was back along with a local TV news, and Hamilton’s local newspaper.

That evening, we began receiving messages from friends & family saying they’d seen Rachel on the news.  We figured there were a lot of people who read through the entire paper to find some small article somewhere. It wasn’t until we were on our way home from the hospital, with both twins, that we realized why we’d been getting so many messages – Rachel was the headline on the front page – along with a life size photo of her!

I had managed to maintain my composure through most of this adventure, right from April on to their birth in June, and all the way through their NICU stay. But seeing my little girl on the front cover of the newspaper was almost too much.

I really don’t think I could tell the story any better myself, so here are just a few of the news items that have been spreading their way across the web over the last few days,  All I can really say is that the reporters all did a tremendous job, and that I’m overwhelmed by the level of interest this has generated. Wow!

 

McMaster’s tiniest baby to go home to Falls
St. Catharines Standard – Tuesday October 15, 2013
Grant LaFleche

 

Smallest baby ever born at Mac goes home
CHCH Evening News – Wednesday October 16, 2013
Lisa Hepfner & Phil McLaughlin

 

Mac’s tiniest baby beats the odds and heads home
The Hamilton Spectator (thespec.com) – Wednesday October 16, 2013
Joanna Frketich

 

Hospital’s tiniest preemie ever thrives and is now home
CBC Hamilton – Thursday October 17, 2013
Kaleigh Rogers

The Long and Winding Road

Friday, August 23rd, 2013

To anyone who reads this blog, I must apologize.  Some time ago I had posted that “I haven’t abandoned this blog”, and in retrospect, that’s exactly what I did … at least for a while.

When I started this website (intending to document my journey as I transform my hobby into a new career), I made a prediction.  I said that I was “certain of only one thing – that the next few years will have some significant challenges”. Those would prove to be some prophetic words indeed!

I am in my late 30’s, and have a young family (two toddlers when this started). This past winter, shortly after going back to school full-time on a 3 year program, my wife & I learned that our family would be growing. We were expecting a new baby.  In January, while I was on my school field trip to Ruthven Park, we leaned that we were having not one baby, but two!  Such exciting times!!!

Then came Wednesday April 10th…

Some would describe a journey like we’re currently on as being ‘a roller coaster’; I prefer Paul McCartney’s description of a ‘Long and Winding Road’.

On that day, we went to McMaster Children’s Hospital (in Hamilton) for a more detailed ultrasound than was available at out local hospital. There was some concern about an earlier blood test. What we found out from those tests, is that there was a rare and serious complication with the pregnancy called Twin-to-Twin Transfusion Syndrome (TTTS). TTTS is a condition where one twin pumps blood into the other through some shared blood vessels, starving themselves of nutrients while over-burdening the organs of their sibling. Left untreated, it is extremely life threatening to both twins. After a very brief meeting with the high-risk obstetrician at McMaster, we were quickly sent off to Mount Sinai in Toronto, expecting to have an emergency surgery that evening in hopes of ‘saving at least one of the babies’.

Unless you have been through something like this, I cannot begin to describe the emotional roller-coaster that follows this type of news.

Upon arriving at Mount Sinai, things got even more complicated. After a marathon session of scans and consultations with a team of doctors, they determined that we were not only dealing with TTTS, but also with a second almost as rare, and equally serious complication called Selective Intra-Uterine Growth Restriction (sIUGR). The big question was to what degree each condition was affecting the babies. In either case, Twin A was a relatively normal size, but had an excessive amount of fluid and over-stressed organs; while Twin B was very, very small, and essentially had no fluid. The decision was made to hold off on the surgery until one or the other caused a change in their condition. In order to closely monitor the babies, we began going to Toronto every 3 or 4 days for follow-up appointments.

On May 1st, the babies decided it was time for them to get some help, and my wife went in for the surgery on the morning of May 2nd. The medical team at Mount Sinai is one of the best in the world when it comes to treating TTTS, and performs most of these laser ablation surgeries for all of Canada (about 150 cases a year). The surgery went well, and we fell back into a few weeks of routine follow-up visits, again every 3 to 4 days. At the end of May, the team at Mount Sinai felt that the babies condition was stable enough that we could be referred back to McMaster (which is closer to home for us), and the follow-ups could be reduced to once weekly…. Well, that didn’t quite work out as planned.

Our first appointment back at McMaster was Friday May 31st – during which the doctors were quite alarmed by the babies condition.  They sent us home for the weekend with strict instructions to come back at the first hint of anything being ‘not quite right’, and to otherwise take it easy. On the morning of Monday June 3, we came in for our follow-up appointment and found that the babies had both taken a turn for the worse. And so, with no other options left, our identical twin daughters were delivered late that evening by emergency caesarian section; at only 28 weeks, 3 days gestational age.

 

Evelyn (Twin A, the larger of the two, and the TTTS ‘recipient’) was born at 11:17pm on June 3rd weighing 1,260g (2 lb, 12 oz) and was 37 cm (14.5”) in length.

Evelyn Blythin

Rachel (Twin B, the smaller and TTTS ‘donor’) was born at 11:18pm weighing just 330g (12 oz) and was 27 cm (10.5”) in length.

Rachel Blythin Rachel Blythin

And that is only the start of our journey.  Evelyn spent the next 70 days in hospital (51 days in the Neonatal Intensive Care at McMaster, and another 19 days in the Level 2 Nursery of our local hospital) and came home on the evening of her ’10 Week Birthday’.

Her sister Rachel is doing well, but had much further to come.  With a birthweight of only 330g, she is the smallest micro-preemie to have survived being born at McMaster in the 40 year history of their neonatal unit.  She is still in the NICU, and likely will remain there for several more weeks.

Today, is the girls original due date – which we will be celebrating as a 2nd birthday each year.  As of today Rachel is up to a whopping 1380g (3 lbs 1 oz) and her sister Evelyn is up to 2780g (6 lbs 2 oz).  Today also marks the first time that I have been able to hold both of my baby girls at the same time.

Evelyn & Rachel Blythin Evelyn & Rachel Blythin

These were not exactly the ‘significant challenges’ I expected when this all began, but such is life.

Although I regret not keeping on top of this blog, I’m sure you can understand that I’ve had other, more pressing matters to deal with.  Since this ordeal began in April, we have:

Driven 13,800 Kms to and from hospitals;

Paid $600 in hospital parking;

Spent $2,300 on fuel;

And I dread to add up what we’ve spent on coffees & meals, and how many hours I’ve spent sitting in waiting rooms or standing next to incubators in the NICU.