I’m going to warn you now that this is going to be long and also will contain very “private” information that might be uncomfortable for some people to read.  You are free to make your own decision about reading further, but I wanted to at least make you aware.

Approximately 24 years ago, hubby and I had a conversation about having another child to add to the two we already had.  We hadn’t done anything to prevent having them, but we also hadn’t been “trying” very purposely to bring that about either.  In that conversation, he, being practical and thinking about the finances said, “I don’t know…babies are so expensive.”  (or something like that)…to which I replied, “Really honey, how much can one child be?”  Let the laughter begin.  Anyone that knows anything about our family, knows that the next child was our “multi-million dollar” baby.

First, we became more intentional about our activities, but to no avail.  Next, we went to the doctor to see what she said.  She told us that many couples need a little help to “encourage things along”, so we went on some low level fertility meds.  Those didn’t work, so she stepped us up to several different ones, but the result was the same.  We were told that we could try IVF, but we didn’t want to take that much control of the situation…we felt like that would be stepping in God’s way.  I don’t think that for anyone else, it is each couples decision to make, but we didn’t feel like it was right for us.

We decided to stop the fertility meds and just put it back in God’s hands.  We started to grieve the inability to have more children and figure out how to move on from there.  There was one last thing that she could do.  She could do exploratory surgery to see why I always had such bad menstrual periods and if there was something physically wrong that could be causing the infertility.  We went through all of the testing and then came the day of surgery.  They did pregnancy testing to be sure, beforehand, and then proceeded.  My ovaries and uterus looked fine.  She didn’t see any reason for the problems.  While it was really good to find out that nothing was wrong, it was disheartening to learn that my body just seemed to be done having children.  After all, I was only 29.  I went home with instructions to take it easy for 8 weeks (no activity…yeah, that).

While I was recovering from laporoscopic surgery, I started having issues with nausea and just feeling blah.  I also hadn’t restarted having a period.  I didn’t seem to be bouncing back like I thought I should.  When it came time for my 8 week check up, I went in and told her how I had been feeling.  I also asked if it should take that long for my period to start again.  

She wanted to do a pregnancy test, just to check.  I didn’t see the point in doing one.  I said that if it was negative before surgery and we hadn’t done anything since, why did we need to even do one?  She said it was just to rule things out.  So we ran the test and it came back positive.

To say that we were dumbfounded is an understatement.  We were so confused.  How?  She said, “no one ever listens to the ‘8 week rule'”.  We emphatically denied doing anything during that time, simply because we hadn’t.  We didn’t understand.  We then had an ultrasound to see how far along I was.  The pregnancy was dated back to the date of the surgery…the baby was 8 weeks along. 

I did loads of research after coming home from that, trying to make sense of it.  A friend of mine that is a midwife said that it is possible that I was pregnant before the surgery, but the fetus wasn’t developed enough to register on the blood test…that within the first 10 days of conception, sometimes testing does not pick it up.  This confirmed what we thought about how baby came about, because we adhered strictly to the 8 week rule.  It also raised SERIOUS concerns though…I had had anesthesia, and pain meds…she had operated on my ovaries and uterus.  How could the baby still be there?  How did I not miscarry?  And the pain meds that I had taken after surgery…what could that have done to the baby?  Instead of being excited about the existance of said child, I was afraid.  

We went home and sometime within the next couple of days, I started bleeding and cramping really bad.  The pain was unbearable.  I actually ended up being taken to the hospital (each time), sure that we were going to lose the baby. This happened at 8, 9, and 11 weeks.  From that point on I was on strict bedrest (at home).

Throughout the pregnancy, there were many problems with the baby and with myself.  He wasn’t developing properly, his growth was restricted, the placement of the umbilical cord limited both his food and blood supply, the amniotic fluid was so low that they had to keep looking for pockets of fluid, during non-stress tests which were done frequently, they would lose his heartbeat and have to buzz him to get it back.  During one of those times, it went from nothing to so high, they thought they were going to have to deliver him that day.

He ended up being able to stay in a little longer, but every day was risky, and with each day he declined and his outlook was more bleak.  It finally got to the point that they had to induce me because caring for his fragile life outside of the womb was easier than doing it inside.  If he stayed in, even one more day, we would likely lose him.

During my labor for him, he turned and was transverse breech requiring that he come via emergency c-section.  He was delivered at 37 weeks, but because he didn’t progress beyond 32 weeks in utero, he had many of the issues of a 32 weeker…and he was a boy.  We quickly learned that “wimpy white boys” do far worse than anyone else.  He needed ventilator support, his blood sugar was 20, his apgars were 5, 7, and 9, his “suck-swallow-breathe” was uncoordinated and weak (feeding issues), had temp regulation issues, his brain wouldn’t tell his body to sleep, he had severe GERD, failure to thrive, etc.

At points we didn’t think we would get to take him home from the hospital because he was so sick.  Then when we were able to go home, he would stop breathing frequently throughout the day and night.  We had to weigh him morning and night on a meat scale because his weight was so unstable.  We were literally at the doctors every single day.

During his early years, his feeding issues and developmental concerns continued to worsten with no apparent explanation.  We had to have a feeding tube placed so that he could get nutrition and life was filled with many doctors and therapists.  When he was 5.5 years old we FINALLY got a diagnosis (we pretty much had to force their hand to test him) of Mitochondrial Disease which explained so many things about all that was his life and disabilities.  The problem is that it also came with a very sad prognosis…that he would have a life expectancy of about 10 years of age.

We lived life like each day was our last with him.  We celebrated every single thing that he learned and was able to do, and grieved each thing that he wasn’t. 

I was asked, by one of his therapists, what my plans were for his future.  That question made me so angry and sad because I didn’t feel like I could ever plan for a future for him…that he wouldn’t have one past 10.  Then when he finally turned 10, she asked me that question again and I still wasn’t sure how to answer.  I cried and told her that I had never allowed myself to plan for him and that I didn’t know how.  So we started to cautiously plan a little bit at a time for his future.

Fast forward to today…he has not only beaten every odd that was ever placed before him, but he is turning 20 years old today and is making plans of his own.  He still has challenges medically which limit many things for him, but he has so much more than we ever dreamed possible.  God has even given me dreams of him as an older man which gives me hope that his future will continue to amaze us and  that he will contine to break barriers set before him.

Happy Birthday “E”!!!

Love, Mama