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Tamara's Story
"Tamara's journey actually started years before she was born..."
Tamara's journey actually started years before she was born. My husband and I wanted another child after our son was born in 1997, so in 1999 when our son was 18 months old we decided it was time as we wanted them to be 2-3 years apart in age. After 4 years of trying we were finally pregnant. We were absolutely thrilled and could not wait to share the news with everyone. We went to bed that night but spent many hours discussing the future. Then the next day while I was at work I had a miscarriage. This was in March of 2003.
Although we were extremely devastated, we were not willing to give up. I began charting my temperature and doing everything to achieve another pregnancy. My system has never been predictable and because of this I either did not ovulate or ovulated on the first day of my cycle. My cycle was also all over the map with anywhere from 32 to 56 days in between cycles. I apologize if this is too much information, however, it is important to know how much of a miracle Tamara truely is.
My doctor had me scheduled to see a fertility specialist because things were just not working. The appointment was scheduled for October. On September 27th I once again began another cycle. After 6 months of charting and 4 years of trying I had still not conceived. I was so tired of trying to do it on my own and being faced with disappointment month after month that I fell to my knees and gave everything over to God. I told Him that if He meant for us to have another child, He would make it happen. I just did not have the energy to continue anymore.
Then 2 days before the scheduled appointment with the fertility specialist I found out I was pregnant. Approximately 2 weeks after turning things over to God! I called the office to cancel and when she asked if I needed to reschedule, I happily told her no thank you as I am already pregnant. So, this is the beginning of the miracle of Tamara.
At 19 weeks I had my first ultrasound and was told the baby was most likely a girl. This was great news as she would be the first biological granddaughter on my husband's side in 20 years. Then, at the next ultrasound at around 28 weeks (not sure on this), they discovered ascites or fluid in her abdomen. I was then sent for a follow-up ultrasound at about 30 weeks. This one showed that although the ascites was diminishing, she now had an enlarged spleen and liver.
My doctor then referred me to an ob/gyn. When I asked what it might mean for my baby, he said I could lose her. I made it to my vehicle barely holding it together. Once in my vehicle, I lost it. I drove all the way home crying my eyes out. I'm still surprised that I made it home as I could barely see. This was devastating after already having one miscarriage.
At this time, my husband's mother was diagnosed with bone cancer. She had battled breast cancer for over 20 years off and on and it had spread into her spine. She kept the severity from us and told us that she would be okay because she didn't want to place any more stress on us.
After finding out that Tamara could die in-utero or at birth, all of the appointments began to run together. I do remember the sequence of events, but not the actual timeline. At the next ultrasound at the end of May, she had stopped growing and gaining weight so I was hospitalized and scheduled for an amnio (which, by the way does not hurt anymore than a mosquito bite) to see if her lungs were developed enough to induce labor. The results showed that they were not.
They discharged me after a week because there wasn't anything more they could do for me in the hospital. I had an appointment every day of the week. Ultrasounds on Monday, Wednesday and Friday and non-stress tests the other days including the weekends. I spent more time at doctor's offices and the hospital having tests then I did at home. Because they still did not know what was wrong with Tamara they wanted to monitor us closely.
At one of the subsequent ultrasounds they discovered that along with the enlarged spleen and liver she now had fluid around her heart. I had another amnio on June 10th with the posibility of being induced on the 16th. Her lungs were still not developed enough for her to be able to breathe on her own so, because they were not sure what other issues she may be faced with they would not be inducing yet. Another ultrasound was scheduled for the 23rd.
I think, by this time, with all the ultrasounds and amnios Tamara was just plain tired of them invading her space (she would punch at the ultrasound technician everytime she tried to find a pocket to do the amnios) that she decided to greet the world on June 22 at 8:16 am. She was 19 days early and weighed 5lbs 4oz and measured 19 inches.
They didn't let me hold her as they were not sure what was wrong with her. While the NICU people were checking her over, I overheard one of them saying that he was not able to hear any breath sounds. I was laying there thinking "What do you mean, you can't hear any breath sounds? She's crying like crazy!" they discovered that the diaphram was missing from the stethoscope. I laugh about it now but at the time I was devastated.
Ok, so now we have this beautiful, perfect, wonderful little baby girl. Her height, weight and head circumference put her in the 3rd percentile. She was 2 days old before I was able to hold her. She had tubes and wires everywhere. I remember thinking how am I going to be able to hold her? She was so tiny and seemed to disappear in all the medical stuff. She had IV, ekg monitors, feeding tube, etc, all hooked up. Just picking her up was a juggling feat. Her bilirubin was so low that she had to be kept under the lights for a while. She had some feeding issues for the first couple of days and then I was able to nurse her and after a day she was able to get rid of the feeding tube.
Tamara was born on Tuesday, June 22 and we were told on Friday, June 23 the news that she had cCMV. Her doctor just happened to be the head of the NICU department at the time. He informed us that she would need to be in the hospital for 2-3 more weeks. We were not told all that much about the possibilities surrounding her overall health. I just remember him saying that because of the illness she could become deaf or lose her vision. He also told us that we would not know the full effects until she was 3.
That Sunday we asked for prayers from our church family and I also phoned a friend of mine who lived in another province to get her prayer chain going. I strongly believe that because of all those prayers she was able to come home on Tuesday, only one week after her birth. She came home without any medical things needed. No feeding tubes, no signs of any difficulties except for the grossly enlarged abdomen.
When they did the MRI and CAT scan they discovered that she had calcifications on her brain as well as a hole between the left and right side. She also initially had fluid around her heart and a heart murmur. They could not tell me to what extent her brain would be affected. Subsequent ultrasounds of her heart showed absolutely no fluid and no heart murmer. Another prayer answered. Her vision and hearing tests also came back normal and have always come back normal. She has no vision or hearing loss at all.
When Tamara was 2.5 months old, my husband's mother passed away. She hung on long enough to see that Tamara would survive and get to know her granddaughter. I swear to this day she comes to play with her. Tamara inherited her will to live and never give up from her and I am so grateful.
We initially had PT and OT with her every 4 to 6 weeks and hearing and vision tests every 6 months. She has done so well that for the last couple of years her OT and PT are only seen when I see her struggling in a new area. Her hearing and vision tests are generally only on a yearly basis as any other healthy child.
The only affects we see from this virus is initially she had a 6 month developmental delay in walking, potty training etc. She is now pretty much where her peers are in all physical development. She is on the 50th percentile for height, 40th for weight and about the 40th for head circumference. They did some testing when she began school and the only problem they found cognitively was in the short-term memory. It is within average range but nearer the bottom end of average. She needs to have things repeated a little more to get them into the long-term memory.
Tamara is now a happy second grader who enjoys coloring, drawing and especially annoying her older brother. She is truly one of God's miracles. Thank you to everyone who took the time to read about Tamara's journey.
- Shared by her mother, Corrine