Motherhood is hard and also the most wonderful thing. I will never forget seeing those double lines that meant I was pregnant! So many thoughts and joy going all around. At my 13 weeks doctor visit the doctor couldn't find the heart beat. So we did an ultrasound. I will never forget these words after we saw the baby on the screen, she said, "Here is your baby, and the heart isn't beating" I thought my whole world was over. But isn't that our first reaction when those trials come at us. I also remember going in for the D&C on Halloween night, and looking out the hospital window waiting to go under. Watching the snow fall and thinking how beautiful that looked. After I felt so empty and after lots of tears I did find comfort in the hope of getting pregnant again...
So after about 4 months I was pregnant again! This time I was so happy but cautious. At about 13 weeks again, they couldn't find the heart beat...My heart sunk. We went to get the ultrasound done and it looked like there wasn't a baby in there. The tech asked a weird question. "When you miscarried last time, did they see the fetus, or just say you lost it" I felt 100% at that moment like all hope was gone. Then he pushed harder with it and you could see this little baby wayyyyy back kicking his arms and legs...I cried and asked, "is his heart beating" the tech laughed and said he is moving of course it is...but I had to see the beating heart. He showed it to me and I felt a calmness and peace. Everything is going to be okay...Once more they couldn't find the heart beat, but that was at 26 weeks. The nurse brought the Doctor in and she found it right away. Stupid nurse...just kidding. So delivery was fine he was a healthy baby boy, or so we thought...
He wasn't gaining weight. After adding every type of formula to help, nothing was working. We saw a gastro doc and he said our son had lots of fat in his stool and wanted him tested for Cystic Fibrosis to rule it out. I didn't know what it was, but didn't sound good. We took him in to get a sweat test which measures his salt levels. CF kids produce more salt and that is how they test. Also you can do DNA tests but there can be rare genes that wont show, but the salt levels will say they have it. The next day we waited for the results. We fasted and prayed all day. As my husband and I knelt in prayer asking for an answer to come, before we said amen, the phone rang...My husband picked it up and again words I will never forget, "So he does have it then" I ran in the other room, called my mom and told her he has it, and I can't call family, and ask her to tell everyone waiting to hear. After he got off the phone he came to me. I was a crying mess on the floor. I didn't know what CF was, but knew it was bad. My in-laws lived downstairs and came up. With our tears they knew he had it and my mother in law used to be a nurse and she then says these words to me, "They are living longer every day" WHAT? This will take his life? I remember looking at my sweet 3 month old baby boy and just thinking "why? why him? why not me" Feeling so helpless. The doctor told us not to search the web because we were meeting with all the CF doctors that next day and the Internet might scare us. I actually listened. I think I didn't want to know the details yet. That first doctor's visit we learned a lot. Our son has Cystic Fibrosis, and he need treatment to help keep his lungs clear. Those can take anywhere from 2 to 4 hours a day the rest of his life. He will need to stay away from bacteria and germs as much as possible. 99% he can't have kids. 80% chance of having diabetes that comes on about age 13 for CF kids. He will need special pills called enzymes to take before he eats anything to help him absorb it. Many other medications and hospital stays and the worst part is a life expectancy of 34! That is not long enough!
I could type a million more things we have gone through with him but I feel I have written a lot. So we don't miss treatments and we give all his meds. He has had 2 minor surgeries. And for a kid his age (6) with CF, he is doing wonderful! I am so very grateful for his health today. I also have soooo much HOPE for a cure that is so close. Having Hope is what gets me through day to day. During the hard times when he is sick or fighting doing a treatment or wondering why no one else has this, I can get close to losing hope. But then something happens that bring the hope back in my eyes. I also don't need to look far to see someone else who has it worse and feel so grateful for all I do have. Having my son is a blessing like no other and I feel so blessed to be able to be his mother.
That is all for now. I will write about my other son who this last year started having seizures and now we know he has epilepsy. I love his strength and hate watching him go through this. That was another trial thrown at us while we are also patiently waiting to adopt a healthy baby girl someday. And that is a big Hope that has been in my heart for the past 3 years! We will see if that dream comes true...
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