Hydrocephalus Canada

Thank You Sophie and Joshua

Print PagePrint PageSend by emailSend by email

Omigosh……after 10 long years of waiting to have our “dream” family and the fertility treatments, the little white stick in my hand had 2 lines on it, we were expecting!!  I was overjoyed finally it is our time. We had a long time to think about this prior too, and did research that I was on the phone booking my first midwife appointment. During my appointment I expressed I wanted to have a water birth at the office, pain free, just natural. A couple of weeks later, that all changed. We were at the fertility clinic every couple of days to do blood work, the levels were very high, indicating that there is a possible multiple pregnancy. A very early ultrasound detected two heart beats!  We went back to our midwife with this news, and my ideal plans had to change. We were now classified as a high risk pregnancy. We were still able to be followed by our midwife, my Doula along with an OB and now we had to have a hospital birth. I was too happy about our news, so I just went along with the new plan.

I honestly hated being pregnant, and yet I really wanted to experience this. Around 5 months I started to feel a heavy pressure in my lower abdomen. It was very hard to walk, I was reduced to tears sometimes. I kept saying I had a feeling they were coming early. My fears came to light on November 12, 2010, I fell down one step on our staircase. I did not fall very hard, but contractions had started. I was so scared; I was only 30 weeks pregnant.

My husband was at work, my step dad took me to Peterborough Regional Health Center, at which time the nurse told me to call my husband. He rushed to my side. They were able to stop the contractions and sent me home. The next morning, as I was sitting on the couch waiting for my husband to get ready to go the barn, at that time after I told him to hurry up, my water broke. I screamed my water broke. My MIL ran to our bedroom to pack my suitcase for me and we were back to our local hospital. I was terrified. I was expecting to stay in Peterborough, but the decision was to fly me by an ambulance helicopter to Kingston Regional Hospital.

The resident doctors were looking after me. I complained about lower back pain, and pressure. I was having contractions. They gave me morphine and gravol for days to help, I was still in pain. They also gave the recommended steroid injections to help mature the lungs of my precious babies. Also they told me it was best to keep the babies in as long as possible, I agreed to their recommendation as we were all alone. No midwife, no doula, and not my OB. During those days I was on drugs I could not make decisions, I was out of it. My poor husband was by my side the whole time and took a leave of absence from work. He kept track of my contractions, got me heat packs, ice water, you name it, he did it without a single word of complaint.

On Wednesday November 17, 2010, I knew something was wrong I could not urinate all day even though I had too, I was literally in tears. Nothing could comfort me, yet they just kept monitoring me. By evening, I dilated very quickly. It is still a bit blurry. Twin “A” my daughter was whisked away from me, born on Wednesday November 17 at 11:55pm weighing 3lbs, 10.5oz.   Twin “B” my son, I only got a quick peek of him was born on Thursday November 18, weighing 2lbs 11oz. He looked like an alien baby to me. I passed out for an hour or so, when I came to, I was determined to see them. They told me I could not until the epidural wears off and I was able to stand. I yelled at my husband to grab my legs. He did and I stood up!! Then the nurse told me I have to urinate before I could go to the NICU, but she thought I would not be able too, again the fighting Irish in me surpassed all odds, and I did it!  I was able to go see my babies!!
I went to my daughter Sophie’s incubator first. She looked lifeless. I knew something was wrong. We were told she is very sick and it is unknown until the tests come back, we faced a grave prognosis that night.

Right away I distanced myself from her, and headed over to my son Joshua’s incubator. I could not stand the thought of Sophie dying and did not want to really look at her in case she did overnight. I still do not understand why I did that.

Joshua was hooked up to wires and a breathing machine (CPAP), and he was moving, which was a good sign. The next morning on our visit to the NICU, we were met by Dr. Flavin. He told us Sophie had Ecoli Meningitis, and the night before she already started a bunch of antibiotics. Infectious disease was also involved with her care. I could only wear gloves and put my hand into her incubator to touch her. It wasn’t until the next night I was able to hold my son. He was stable but still hooked up to wires and a special cocktail of special NICU food fed through an IV. The moment when I got to hold him…. This moment after 10 long years, touched my heart beyond what you can imagine. At least I could hold one of my babies. We did the kangaroo care for weeks – holding them close, skin-to-skin. [Research has shown this to be beneficial in the development of premature babies]

On December 3, 2010, our world crashed. When we entered the NICU, a social worker met us and followed us into Dr. Connolly’s office. I am in the medical profession as well and knew something was wrong. He showed us a head ultrasound of Joshua’s brain first, which was good, during that I looked at him and said something is wrong with Sophie’s. He asked me “how do you know”, I told him common sense. He showed us Sophie’s head ultrasound. It was a big black mass. He explained the ventricles are like lakes, and went through what was happening. He told us our baby girl has hydrocephalus, and severe brain damage.

The floodgates opened, I just cried and my husband was quite but I saw tears in his eyes too. My perfect baby girl,that I always wanted has brain damage. I did not know what Hydrocephalus was, I just focused on brain damage. He told me not to go onto the internet, well we did at the house we were staying at close to the hospital called Almost Home. That was a big mistake, it was all bad stories I was reading, but now I had some knowledge into this neurological condition.

Finally after a couple of weeks of asking they finally called SickKids and they flew out to get Sophie, she was 4 weeks old. The next day just before Dr. James Rutka, a neurosurgeon had placed a VP shunt into Sophie’s brain to help relieve all that pressure that was building up, we had Sophie baptized. This was very important for us to be done. We could not be present, but the nurses took pictures for us. Which, I hold dear to my heart.  Our local church Living Hope Christian Reformed in Peterborough, prayed for them since the day they were born and continued to pray for them. I believe through the grace of God and the prayers that were prayed for them, they fought through this all the way.  She was discharged after the successful operation to our home hospital in Peterborough.

During this time, I cried but yet tried to stay positive. I did not know what to think and was just going through the motions of life. I continued to supply breast milk to both NICU’s  (Toronto and Peterborough) for my babies. I felt they really needed my milk to make them stronger. Joshua came home from the NICU just before New Year’s Eve. Sophie had to stay. In January 2011, our baby girl got to come home and what a wonderful feeling that was. As soon as we got home, our black lab, Buddy, came right over and started to smell the area where her shunt was. I found that very interesting because he picked up on that!

Sophie started projectile vomiting that June, and in July had two revisions done within 2 weeks of each other. The nurses just fell in love with her, she was a very good baby in the Neurosurgery 5C ward. We returned again for a third revision that December. This time she was in isolation for a week due to a blood infection, then had her revision the following week. She has proved multiple times that she is like her mother with the fighting Irish spirit. We like to give a BIG thank you to Dr. Rutka and Dr. Dirks for saving our baby girl, multiple times.

Now, Joshua on the other hand, is showing signs of developmental delay compared with Sophie. An ultrasound confirmed he has mild hydrocephalus. He did not need a shunt but to be monitored. As I write this during the month of October 2012, they are now 23 months, we are waiting for an MRI for Josh as he was showing some neurological signs that is not good. My once perfect boy, I thought I would never really have to worry about is going through all of this. I will be by his side all the way, and no matter what he is perfect for our family!! Sophie passed at a 3 year old level!!! I was so happy. I thought “what brain damage” as it is always in the back of my mind. Then they told me she has mild cerebral palsy. They said she will never be a ballerina or a runner. I cried as this extra label was added to her. But my stubbornness came out. We will be signing her up for ballet lessons at 30 months!!!

Last year Sophie and Joshua were in our local paper a few times. I started a local hydrocephalus and/or spina bifida group along with my co-founder Jennifer Fraser (she has a son Quinn with hydrocepahlus). I met Jenn on Facebook, and  funny thing is we live 30 minutes from each other.

A great friendship has developed between our families. The Spina Bifida and Hydrocephalus Association of Ontario, has been so helpful to us with all their information. Every time I call, I always have a friendly voice on the other line, or an email is quickly answered!  We started doing beauty pageants with Sophie with Sweet Darling Diva’s. When they heard of Sophie’s neurological condition, they picked The Spina Bifida and Hydrocephalus Association of Ontario as their next charity of choice. Between Sophie and the pageant family, they were able to raise over $400.00!!  We had the pleasure of meeting Ken from SB&H at another pageant as Sophie was able to present the money to Ken. The judges at this pageant did not realize Sophie had this condition, she is a beautiful, bright little diva. Her brother comes along to the pageants, but he would rather sleep through them, than perform himself. Two different personalities, I just love both of them so much. Through SDD, Sophie was the charity of choice winner by collecting over 140 toys for the SickKids toy drive through the pageant in September. In total over 300 toys were collected from our pageant family. We went to SickKids with our director Lindsay Gilmour and her precious family to present to the hospital. Citynews was on hand and did a little story on Sophie and Joshua. They are local celebrities now, and are helping to spread the word about Hydrocephalus!

Our life has been a journey and will continue to be one. We will not set limitations for our children. We waited 10 years with struggle to have our “dream” family and it taught as a lot about life. Sophie and Joshua have opened our eyes to the real world. And I want to give thanks to both my children for the gift they gave to us. Thank you from the bottom of our hearts Sophie and Joshua. Love Mommy and Daddy.