Miracle of Grace Neala Tamsin

This is Grace's story, first from her point of view, then a longer more detailed version of how she has kept us on our toes so far in her short life to date.


HI! My name is Grace Neala Tamsin Densmore! My mommie and daddie named me after Grace O'Malley, an Irish pirate who sailed the seas for SIXTY YEARS! My middle name, Neala, means female champion, and Tamsin is Celtic for twin. I was born a micro preemie on Sept. 15 at 26 weeks, weighing 1lb, 7oz at the IWK. That, in itself, isn't extremely remarkable, but how I got there and my journey since is:my mommie's baby doctor says it reads like a fiction story, it's so incredible and unbelievable, lol!

My mommie and daddie were VERY surprised at the little plus sign signaling my existence, as mommie had medical reasons for thinking I wasn't really possible, and they were very happy with their three kitties. Added to the surprise was that I was a fraternal twin, an even SMALLER chance of happening! OH, MY!!


Then, on July 15, 2013, at 17 weeks, Mommie got very sick with a food borne illness called Listeria and tried to go to the IWK. Her car died on the way, and the cab driver took her to the wrong hospital before she got to the Grace!  My twin didn't survive, but I DID!! Mommie's water also broke two days after we arrived. That made me a bit of an anomaly because very few babies actually survive Listeria and NEVER a twin, but I was determined, and I plodded on without amniotic fluid until I was delivered in distress at 26 weeks. Before I was delivered, the doctors also discovered that there is a piece in my brain missing called the Septum Pellucidum. This is a very rare condition, as well, with not much being known about how it will ultimately affect my life and learning:maybe not at all, maybe VERY MUCH!  Mommie's baby doctor says they will write papers about me so I can help others!


Mommie and Daddie were very sad that I had to come so early because it meant, most importantly, that my lungs, immune system and brain were very underdeveloped:I had to be on various oxygen machines to help me breathe and I was 39 days old before Mommie and Daddie were able to hold me for the first time. I have very tiny lungs and still need some oxygen.


Mommie says I have a Bucket List of preemie complications that I feel I need to accomplish before I leave NICU, lol! I was jaundiced so got to have the blue spa lights and had the PDA valve in my heart not close properly, both expected preemie issues. Because I was a micro-preemie and had been exposed to lots of antibiotics before I was born, I am now having lots of problems with infections. I also almost went blind with a preemie thing called Retinopathy of Prematurity, but some VERY good doctors caught it in time. It can be caused by overexposure to oxygen, making  the veins in my eyes grow kind of crazy:the need for oxygen also contributed to a problem with my bowels twisting when I was still not even supposed to be born yet at 32 weeks. When I had a breathing tube put back in after I pulled one out, I got extra air in my tummy and bowels and it made them twist and die:I had to have emergency surgery to remove part of my bowel. The extra air also gave me hernias! I have had three operations, so far!


The docs had a hard time trying to find food that will give me the nutrition I need to grow. They're very concerned with my growth, because I am a tiny girl, and every time I have something go wrong, they don't want to stress my tummy so take away my food and feed me through a tube. They now think I might not like milk, so Mommie has to not like milk, too, if she wants to feed ME, but I may have to go on some special food to chub me up. Doctors get excited over my charts because I am so complicated, lol!

Mommie has been with me in the hospital every day, except when there were emergencies at our home in West LaHave, and Daddie has had to live away from home to be able to work as a commercial electrician, but trades can be spotty at the best of times, especially in winter. My Auntie Audrey looked after our kitties in our house till winter while Mommie and Daddie has been gone, but Mommie misses them terribly and will probably be able to count four seasons living at the hospital:not a record, but still a VERY long time! They even gave a man a very good opportunity to look after the kitties rent free in our house, and he made things much worse by not loving the kitties or paying the bills.

Everybody says I am an EXTREMELY feisty girl, and a real fighter, so I will keep doing my best so I can go home and see my three kitties! Now Mommie will tell a longer version of my life!


I find it difficult to compound all of Grace's story into something concise when I am trying to describe it, and there are so many things that have happened to her,  so I will start from the beginning...

Husband Neil Densmore and I weren't really thinking kids would be part of our lives, and hadn't really given it much thought since I had had an ovary removed nine years ago...children ARE still possible but after such a long time, not much of a thought...in fact, before we were sure, I had told him there were two possibilities of what I thought was wrong with me...one was menopause, the other pregnancy, and since I was 44, I sincerely hoped it was menopause! I really didn't relish the thoughts of having to deal with some future version of Justin Beiber when I reached 60 with a teenager!! I wasn't in a real rush to find out for sure, so waited another week before we were presented with that little plus sign. Oh, my...I was due December 22.

Before our first OB appointment in Bridgewater at around 12 weeks, we all made jokes about wouldn't it be funny if it was twins, since the incidence of twins rises with higher risk pregnancies, which I certainly was due to age and I did have both identical and fraternal twins in my family...not really thinking it would be a reality...the first ultrasound was certainly a shock, when the radiologist insisted on showing me the results before I brought in my best friend, Audrey, and my mom and aunt, none of whom had seen a live ultrasound of a baby before...and then for it to be TWINS! I didn't know whether to laugh or cry! And the incidence of fraternal twins with only one ovary is pretty slim.


 Because I was considered high risk, I also got an OB at the Grace Maternity in Halifax, and it was at the first appointment there that we discovered that one baby MIGHT have a Trisomy 13 or 18 genetic disorder, but they wouldn't be able to confirm for awhile...if confirmed, the likelihood of that baby surviving would be slim and if it did, there would probably be very severe problems.

The pregnancy proceeded fairly uneventfully with only low level nausea that went away, then seemed to return when I was about 16 weeks along...it was mid July and about 34 degrees out and I felt absolutely miserable all weekend, and ended up going home early from work that Monday, the 15th...by dinnertime I thought I was miscarrying and phoned the local maternity ward, but policy there is to not take anyone till at least 20 weeks because before that timeframe a fetus isn't viable. After hearing my symptoms, they suggested I MIGHT have an infection, but, their words, if I went to emergency, since I wasn't bleeding profusely, I wouldn't be a priority so it would be hours before I was looked at in all likelihood, so their suggestion was that I take a warm bath.

Luckily, I had already been to the Grace, so I called them and gave them the same information about being high risk, twins and one with a possible health problem and my symptoms, and they said I should come right in. I was crying as I hung up the phone, but left immediately.

On the way, my car lost power twice on the highway but luckily restarted, died once just off the Armdale Rotary on Quinpool just as rush hour was starting, then finally gave up the ghost on South Street by Dalhousie Univeristy...I had to call a cab...which took me to the WRONG hospital!! I had doctors waiting for me at the Fetal Assessment Unit after hours, and I am standing in the wrong hospital...thankfully, the desk clerk at the QEII called a new taxi and gave me a cab ticket to get me there, as I had even left home without my wallet!


 I was given an ultrasound almost as soon as I walked through the door by my OB, Dr. Mike Vandenhof. Sadly, they were able to confirm that the compromised baby had died, and it was quite recent, and they were fairly certain that I DID have an infection, but they weren't sure what, so I was to be admitted for a couple of days so they could find out what the blood cultures they needed would show them.

Two days after I arrived, my water broke, and later that same day, the Infectious Disease department came to see me and confirmed that I had pretty much the worst thing a pregnant person could get...listeria. On top of that, because it was twins, they really weren't sure how to treat the listeria...babies rarely survive such an infection, and because it was twins, the one twin that had died could act as a breeding ground for the bacteria and keep the infection active...unfortunately, that twin had to stay the length of the pregnancy because removal was too risky to the surviving twin. There was just no medical literature about how to proceed...they decided on the most cautious route and told me I would be on heavy doses of antibiotics for the duration of and three days after the pregnancy.


 And lack of amniotic fluid made sudden labor more of a risk, as well as the fact that baby's lungs would be severly underdeveloped and the compression caused by lack of fluid would make it's limbs wonky, though that could be fixed with physio down the road. Weekly ultrasounds were performed, and there was always hope that amniotic fluid would start to accumulate, but nothing significant ever did...reaching 24 weeks was a real milestone, because that is when a baby is really considered viable enough to try and keep alive and I was given steroid shots to help build baby's lungs, though the health risks and complications are mountainous...

Then, at one of my Friday ultrasounds, another blow...(they THOUGHT it might be a girl, but without fluid, it is very difficult to determine sex, but everyone was happy that it might be female, as statistically they do much better in adverse conditions) Baby seemed to be missing a piece of the brain called the Septum Pellucidum, a membrane between the left and right hemisphere that facilitates sending signals back and forth, can affect the optical nerves and cause blindness, affect growth because of its proximity to the pituitary gland, and developmental growth...but AGAIN, a very rare condition with very little known about long term outcomes...there are loads of people without this piece who function perfectly normally, while it can go the whole spectrum to complete mental handicap and no way to indicate how severe or non-existant the problem could be.


 At 26 weeks on the dot, having only gained about seven pounds and not even looking pregnant, I sufferfed a placential abruption...baby was in distress...TOO EARLY!! BABY NEEDED MORE TIME TO DEVELOP! And my first prenatal class was three days away! Unfortunately, that was no longer an option, and a one pound seven ounce micro preemie baby girl was delivered by C-section at 2:39pm on September 15, fourteen weeks early. These combinations of complications make the doctors say they would like to write papers on baby's situation once they see how development progresses.

Neil and I had a hard time deciding on a name for this little being...we had wanted Celtic names to honor Neil's Irish background, but had difficulty getting around some of the spellings and pronounciations. We finally settled on a name that she certainly has shouldered well to date. Grace Neala Tamsin...Grace after a female Irish pirate, Grace O'Malley, who sailed the seas for for 60 years during the reign of Elizabeth I(nickname the Celtic version of Grace, Grania)...Neala is Celtic for female champion...and Tamsin means twin in Cornish...


 Grace cried as soon as she was born, and there were high hopes in the first hours because of that, that her lungs wouldn't be too bad; she was on a respirator, but that isn't unusual for preemies, and we were told we would probably be able to hold her in a day or two...then she started to have more troubles breathing...she ended up being put on a different breathing machine called an oscillator, generally only used on babies with severly damaged lungs. While it seems like the machine shakes the baby, it delivers a very fast, very gentle air to baby's lungs that lets the baby do less work that will tire it out and use up valuable oxygen. We didn't get to hold her till she came off the oscillator...she was 39 days old...

During those early days, there were many concerns that micro preemies deal with, and Grace seemed to want to experience them all, things like jaundice(she got to bask in the pretty blue spa lights to help her liver), brain bleeds(she had a tiny one that didn't seem to be a problem, they HOPED), brain swelling(she had some but not serious enough to warrent a shunt to drain...let's just keep an eye on it, docs said, and eventually things seem to have sorted themselves out, time will only tell if development will be affected), PDA heart valve that didn't close as it would normally do with full term babies(they were glad Grace's didn't close despite treatment, because when an infection developed, the PDA relieved stress on her heart and lungs created by the infection)...and her limbs and head were wonky and squished from the lack of amniotic fluid, made worse because being on breathing machines greatly restricts how you can lay these tiny babies to help shape their heads and work their arms and legs properly(these things are then worked on later with regular physio and attention to how you lay baby through the day and in bed).


 Then, at about six weeks old, Grace's belly started to get really big and discolored...they discovered after an x-ray that she had a twisted bowel and a portion of it had died and was leaking poison into her body...it needed to be removed immediately or she could die...sometimes, preemie bowels are not tacked down properly, and after Grace accidentally pulled out her breathing tube, extra air got in her tummy and bowels when a new tube was being inserted. One third of her bowel needed to be removed, about 20 cm, and she would need an ostomy bag till she was strong enough to withstand another surgery. Now there was the possiblity of growing problems because her bowel was no longer long enough to absorb nutrients before being flushed out. And the whole time Grace was on breathing macines, she could only be fed through a tube...blood transfusions have also been a regular part of Grace's life...it takes a LOT of energy for these micropreemies to just BE, and that stress combined with the amount of blood tests that they sometimes need really puts the importance on blood donation. Grace has had times when they need more blood than she can replace quickly enough...she has had at least five transfusions in her little life so far.


 Grace's next big adventure with her Preemie Bucket List dealt with her eyes shortly after the bowel scare...Retinopathy of Prematurity is another preemie issue that is closely watched for...it can cause blindness in babies who are overexposed to oxygen as these preemies are, making the veins and blood vessels in the retina grow really crazy. There are five stages, zero being normal, five being blindness. Caught early, the damage it causes can be stopped and reversed in varying degrees of success...Grace's weekly eye exam was on a Monday...docs were concerned and said they would recheck on Wednesday. When they returned, she was at a very aggressive stage one, and told us they would need a decision from us by Thursday morning whether we preferred to do laser surgery or needle injections in her eyes, to be performed by noon time. There were risks with either procedure, both equally successful. Longterm effects of injections not totally clear but could be done at bedside, but since laser surgery is not life threatening, we could be bumped if something more severe required the operating room and wait time to see if it actually succeeded was longer...we opted for the injections...by the time the doctors did the injections at noon on Thursday, Grace had progressed to Stage 3...docs said afterwards that we made the right choice. She is now regressing successfully and slowly towards one, but will undoubtedly need glasses.


 When I had to so abruptly leave home, hubby Neil had been working as a commercial electrician in the city, and that has been spotty economically while he waits for one job to start once the previous one ends...and we left three kitties in our house. We didn't want to traumatize the kitties by taking them out of their home after not having us around for so long, so wonderful friend, Audrey, stopped in twice daily to tend to and love them till the winter came, but understandably didn't want to commit to it once the snow flew. Winter posed problems for us with heating our home, so we advertised to find a boarder to live rent free in the house as long as they paid the utilities, bought their own oil and loved and cared for the kitties...we thought we had found the perfect candidate, a fellow with a good job and good references...turned out he used the oil till the tank was empty and pipes seized, didn't pay a single bill and didn't love or tend to the kitties except to put down a minimal amount of food...he abandoned the house and kitties before New Year in -25 degree weather...


 Grace's bowels were reconnected in a second surgery the end of January, and then the struggle with retaining food long enough to absorb nutrients began...as well as continuous battles with infection...three so far just since her re-connection, and there were at least two in the months before. She is prone to infections just because of having the underdeveloped immune system micro preemie, added to her extreme exposure to antibiotics before being born.

Crazy crooked veins are another by-product of micro preemies and the steroids they need to boost lung development. Having these crazy veins means it is super difficult to keep an IV line stable to feed them the nutrients they need to thrive and grow, or to administer medications. Grace has had Venus lines, Butterfly lines, IV lines, central lines...they have been in her head, her hands, arms, legs and feet...she had a central line inserted in her leg that lasted a miraculous three months, and finally gave out in February...it then took five doctors five and a half hours to try and get a new line, but every try, the vein would collapse because there wasn't a long enough length to accomodate the needle. So off to the operating room she goes for surgery number three to have a Broviac tube put in her chest...this way, she has a stable entry site to be given fluids, nutrients and fat lipids to help her grow, as well as any meds she may still need. Doc says jokingly it will stay in until we five minutes before we are sure Grace will be discharged to go home.


 Now they aren't sure she might be lactose intolerant...but we aren't sure about that yet...Grace slowly graduated from the oscillator, then the ventillator, to a C-Pap machine before Christmas to high flow oxygen, then to low flow and now no oxygen assistance...her lungs will be a concern for the next few years, as she will be prone to severe illness from viruses that would cause simple sniffles in other children. This means we really have to limit her exposure to germs, and during the December to April flu seasons, most parents of micro preemies only rarely take their little babies out of the house or allow exposure to anyone because of the extremely high risks...early enrollment in any type of child care outside the home is likely to be impossible.

Docs are still concerned with her growing, or lack of...as of April 15, she will be seven months old(though just under four months from her actual due date), but she is still only just around eleven pounds...Grace has follow the proscribed growth chart that all preemie babies follow, but she made her own neat little line along the same arc BELOW the rest of the crowd! She may be tiny, but she stands behind the name that seems to have been destined for her. She FINALLY hit the lowest line the last week she was in NICU the end of March, before we got moved to the Pediatrics floor.


Grace's last NICU stunt involved her bowels, again...in the beginning, it seemed her lungs would be the longterm problem, and brain development will be a big questionmark for awhile yet...at least when she chooses a complication, it's usually just one major thing with a couple of little things thrown in just to make it interesting! The minor issue as well those days was a fire engine red rash on her tush that docs have thrown every bum cream, salve and ointment at, even to the point of saying mix them all if you have to! There are cute pics of her getting the pure oxygen treatment to help cure the burned skin...the much more serious issue wasn't really been identified. Some of the symptoms Grace presented mean it could be something called Necrotizing Entercolitis, which is the diagnosis they finally settled on. It's not something babies the age that Grace is now contract, it usually presents when they are still premature, very early on. The other possibility the surgeons tossed around is a complication from her reconnection...a possible narrowing or blockage of the bowel. She also had an intestinal biopsy for further investigation for possible Hirshbrungs disease...neither of the above possibilities were particularly pleasant prospects to consider...


Which leads me to a another whole aspect of this story that totally slipped my mind and didn't really get touched on...breastfeeding! Something I had sort of planned to do in the back of my mind once the reality of pregnancy set in, mostly from an economic point of view, but also for baby's health.

But, having a micro preemie, the importance of using breastmilk becomes abundantly clear, the reality of producing it, less so...these tiny early babies systems absolutely CANNOT accomodate formula, so mama's milk is SO much more important in a NICU. It took Grace a LONG time before she was able to start drinking milk, and she only started out at a mere one milliliter, given through a syringe every two hours. And oddly enough it turns out I was very good at production. I seem to be an exception to the rule...for many NICU mamas, providing enough milk for baby to thrive is difficult for a number of reasons...the extremely early delivery and the stress of having babies in here under such adverse conditions just to name a couple. I once calculated early on that one pumping session of the eight done per day at Grace's one mil per two hours would provide her with milk for about a week! 

Gradually Grace's milk intake did increase, but every time she has had a complication, her feeds have been taken away so as to not agggravate her tummy...she does get the nutrition she requires through her IV, but now that she's older and has experienced feeding on her own, it bothers her much more to know her belly is empty. Before her last surgery for the Broviac tube, Grace had made it halfway to full feeds for her age and size at the time, 62ml every three hours.

With her up and down intake, storage was a real issue, notwithstanding the fact that she would probably be five before she were able to get it all if I kept it. So, I decided to try and help other mamas who needed milk for their babies for various reasons...some babies get reflux so badly from formula that they just can't keep it down...for others, necessary surgery has made it impossible for them to produce any significant amount. So, in effect, Grace has already helped five other babies during her "misadventures" with her own tummy issues.


When I was on the seventh floor in the fetal assessment unit, there wasn't really very much to do...I could only accept inbound calls and didn't have television because of the prohibitive cost. I had a lovely view overlooking the garden on University Avenue, and I watched the flowers from the full bloom of summer change to the more rustic colors of fall in the nine weeks I spent in Room 703. I could only go to the garden in a wheelchair, so didn't really venture out unless someone took me. The IWK does provide free WiFi, so Neil brought me a computer to connect me to the outside world. And that's how Grace became loved and followed by so many people...it was firstly kind of an announcement to those we hadn't already told that a baby was on the way, and more importantly, became a way to let everyone know the progress of things without having to go over and over it on an individual basis...it's one of the suggestions nurses and social workers make here, and I also think I found it a bit theraputic...it became Grace's mini-blog. Before Grace arrived, posts weren't nearly as frequent, usually just after ultrasounds or doctor's meetings.

Once Grace arrived, along with all the extreme worries associated with her, we were faced with how we would be able to stay with her, and I absolutely cannot fault the efforts of the hospital to try and help in that regard. Neil has been staying in Dartmouth since February because of his job, and family live there that he can stay with. But he doesn't drive, and since our car had given up the ghost, transportation back and forth to the hospital was impossible...I might as well have been in Bridgewater...it takes the same amount of time to get to the hospital by bus from Dartmouth!
 

Once I was discharged from Floor Seven after Grace was born, the social workers moved heaven and earth to get me a room in NICU...I settled into Parent Room One for the duration, a windowless room equipped with a double bed, chair, bedside table, bar fridge and bathroom with shower. Television and local phone WERE provided on the unit without charge...definitely not the Hilton, but I could be with the baby every day. We would laughingly talk in whispered tones when anyone ask where I was staying to not jinx having to give up the room for another family in need.

Another challenge when living away from home in NICU is meals...when you are an inpatient, three square are provided till the day you are discharged, and while it can get monotonous after nine weeks, the food really wasn't bad. Once you are no longer a patient, you are eating out of pocket and the choices become very limited and expensive as time goes on. Ronald McDonald Family Room provides about three suppers a week, but that is available to all IWK families and is on a first come first serve basis...when it's gone, it's gone. Time organization is a real challenge to make sure you get yourself fed, and sadly, it becomes less healthy choices when the mamas need nutrition the most.


 Many long term mamas and families on NICU get to know each other, some better than others, and we have made many friends here. One mama from Bermuda named Maria arrived days before me in the summer. She had a one pound four ounce boy at 24 weeks. After a couple of months, she told me I needed to be aiming for Parent Room 7...it was roomier, and it had WINDOWS! Grace was upgraded slightly and moved to NICU 2 after Christmas, and I would laughingly drop hints to the social workers about Parent Room 7. After four months in Parent Room 1, we got what we jokingly call the Penthouse Suite..sunshine! daylight!.For long haul families, it's really hard to keep the days in check...time blends, and days pass unnoticed...your whole world is the size of an incubator or crib.

Grace and my's combined total days if we get released April 22 are 219 for Grace and 287 for Mommie. And even if there is a light at the end of the tunnel for our NICU and IWK days, it's still a long road once we leave...three years of follow-up programs, especially since Grace has felt the desire to meet almost every medical department existing! And that doesn't include any studies she might undergo if doctors do opt to follow her for her brain anomoly.