Angel of the Month

IMG_0479Thomas “Bubby” Everson

“This is the story of our journey…”

Thomas (my husband) and I tried to conceive for 6 months before succeeding. The day we found out we were pregnant; we were at his mother´s house in the bathroom. We were hugging each other so that neither would look at the test till it was time. Time came, and it showed us two lines. Thomas’ first response was “it is broken!”…It was not…

I did what I thought I should do, by taking vitamins and cutting down on my caffeine. The one thing I did not change was my work. I loved working with the foster children that we took care of, I could not just stop seeing them. They were my world and we even wanted to adopt them when the time was right. At about 12 weeks along I got really sick, with what at that time I thought was the flu. I recovered after what seemed a week or so. We go on with our work and are enjoying this precious gift from God. Everyday there is something new to learn or advice to be heard. Lots and lots of advice; sleep when baby sleep, you should breast feed, trust your doctor, don’t do this or that….. not once did anyone say “watch out for this virus…. CMV, I heard it could do a lot of damage to your baby.”

15 weeks- Ultrasound shows thickening of the neck, common sign for down syndrome. At that time they asked if I wanted to have genetic testing done, we declined. We were then sent to the University of Washington to have another more in-depth ultrasound done. The doctor who ran the test said he wasn’t sure what they saw but there is nothing there. At this time I am not all that worried, after all… He didn’t see anything right?

18 weeks- Ultrasound shows ascites (fluid in the abdomen). About 3 hours after the ultrasound I get a call from my doctor (I am at work and so is Thomas). She tells me that she thinks there is something wrong, and this time it is serious. She said, “The baby has fluid accumulated in his belly, which is indicative to a congenital heart defect and anemia.”….. Again we went to the UW for another in-depth ultrasound and again they could not find any signs of what the other technician saw, no heart defect, nor anemia. His ascities is still there however, so they want to do an amniocenteses, we decline. Finally they decide to run a TORCH, which tests for 5 different categories; toxoplasmosis, other infections, rubella, cytomegalovirus (CMV), and herpes simplex virus (HSV)…I was told that my test was “within normal range”…If you are reading this, then you know they were mistaken.

20 weeks- Ascities is still there and growing. We are told “We do not know what is wrong with your baby, but you have 2 weeks to decide if you want to abort”…we declined that as well.

25 weeks- preterm labor starts and I am put on a medication. I cannot remember the name but it made my hands shake so bad I couldn’t hold a cup to drink out of it. I still am having contractions but the dilating has stopped at 1cm. The doctors at the UW said that if his ascities does not clear soon I will have to give birth there…man do I wish that had happened.

35 weeks- Finally free of that medication!!! Also, the ascities seems to be clearing up, only to show fluid in the kidneys.

39 weeks and 3 days- My water breaks at 3am. Rush to our hospital (not UW),bag in hand…just to be sent home again because only one of the tests used to see if it is in fact was my water was positive. They prescribed me some amazing medicine to stop the pain and help me sleep. I do not remember even making it home and into our bed. While I slept Thomas kept a close eye on me. 5pm I wake up to eat something and use the bathroom, then fell back to sleep. 7pm I wake up with a pain that felt like someone was poking a finger in my cervix…And POP! There goes what was left of my water. Again we go to the hospital, this time I have a temperature of 103. They determined that I had a high tear and that is why they were unsure before. I have an infection now which my baby also has. Our labor was very difficult; they had to try to use mineral oil to help him out. During labor he got stuck, his arm was in the way and they couldn’t get him out. I remember my doctor saying “ok honey, we need to do this and we need to do this now! ‘get the vacuum’ ok, when I say push you PUSH!” I pushed with everything I had in me and she pulled with everything she had in her (in the video you can see that she has her foot on the bed and is pulling with all her might).

After 36 hours of labor our son was born, Thomas Everson II aka ‘Bubby’. He was 8lbs 3oz and 21in long. His first apgar score was 8 and his second was 9. After about 5 hrs I noticed he was very orange, not tan, but ORANGE! I told the nurses I wanted his levels checked to see if he was jaundiced they told me “oh its just the light in here, we will take him in the hall and check out there”…Thomas (with camcorder in hand) along with the nurses went out into the hall. The nurses go back and forth on whether they think he should be tested… finally one says “eh we might as well”. Needless to say, they did not do the test. They then took my Bubby to his newborn hearing test, he failed in his left and was inconclusive in the right. Then came the ultrasound to check to see if the fluids in his kidneys has gone away, it had. So after our 1 day stay we were sent home. As soon as we got home I called his new Dr and asked if we could bring him to have him checked for jaundice. They called shortly after we had arrived back home and said if his levels had been 3 points higher he would be admitted (wish he had) and the nurse was on her way with light therapy. After 3 days of therapy he was “all better”.

For the first 4 months of Bubby’s life I would notice things like tremors, he would not hold his head up, not sleeping, and his head did not seem to be growing as well. Every time I would bring this up to his pediatrician she would tell me everything was fine, and in one appointment she said I was being over-bearing and that I needed to stop worrying. No one was listening, not even my family.

When Bubby was 4 months old we decided to move and change doctors. At our very first appointment his new doctor noticed he was having a seizure and also noticed how small his head size was. Within a week we were at Seattle Children’s Hospital trying to figure out what was wrong with our boy. At his first CT scan they told us his brain damage was so severe that he wouldn’t walk or talk nor be potty trained.

Bubby was severely delayed, he did not sit till he was 12 months, crawl till he was 18 months and didn’t walk alone un-aided till he was 3. At 10 months we found out he was deaf. By the age of 4 he had lost all hearing.

During one of Bubby’s ENT appointments (when he was 2 1/2) as the Dr was walking out he turned and said…”I have an idea, but I’m not going to tell you what it is because you will just go home and look it up and panic.” Not knowing what test was being done I gave my permission to order his heel pricks from the health department. At the 2 week mark he calls me and asks if anyone had called me yet I told him no. He then says “well… I have good news and I have bad news… Good news, we now know what is wrong with your son. Bad news, you don’t want your son to have this.” He then proceeded to tell me all the complications that came with having cCMV. We were devastated to say the least I did not sleep at all fearing he would die any moment. I was also very upset that I had given him this disease. I felt so alone. Bubby is now 5 years old and a handful. He now has a cochlear implant which has help tremendously! He has cerebral palsy, ADHD, ODD, OCD, microcephaly (small head), food and oral aversions, doesn’t eat and is primarily liquid fed, autistic, sensory issues, and the list goes on. We struggle sometimes but it is all worth it just to see his smile! I have had someone ask “If you could change him would you?” I tell them no… because Bubby would not BE Bubby if he were any different. He is my baby and our miracle, and I and grateful every day that I get to be his mommy.

- Shared by his mother, Brandi