Thursday, December 27, 2012

hello!

It has been a long time since I have blogged! With good reason though.
Lets see what has happened since I last blogged & I warn you that this is a LONG post.
Well I took a long break towards the end of my pregnancy because it was just a really hard time for me.
I was diagnosed with a connective tissue disease called Ehlers Danlos Syndrome. I have type 2, classical. Growing up, I was insanely limber. It was great for gymnastics and freaking my friends out with the creeping things I could do like hyper extending my knees and doing back bends into chest rolls. In high school, I started dislocating my knees a lot especially while playing volleyball. I even dislocated my shoulder while sleeping once, extremely painful. During my pregnancies I suffered from excruciating back pain. I always thought this was what all women went through, you know the sciatica etc. But this last pregnancy it was different. I couldn't walk and my hips were popping constantly. At first we thought it was just the relaxin hormone that is released to widen your hips and prepare them for child birth. But it was so painful. Then I dislocated my knee three times, twice while holding Betsey....dropping me to the ground and dropping her as well. Also, with each of my pregnancies, I have gone into labor earlier and earlier. During this time, my extended family went through a major diagnosis. My aunt had been struggling with some health issues and was diagnosed with Ehlers Danlos (EDS). She suggested my grandma and dad be tested because it is a genetic disease and typically 50% of your family is effected by it. Sure enough, they were positive for it. My Aunt, who is also a physician, told me that I had more than half of the symptoms for it. This was in my third trimester of my pregnancy and after finding out more information I was more than freaked out. Our families genetic strand also has vascular issues, which is very dangerous and can cause ruptures. I was in my 5th pregnancy, facing my 5th cesarean....and put 2 and 2 together, your uterus is the most vascular part of your body outside of the heart. Having repeat cesareans puts you at a risk (low) for uterine ruptures, adding that I had 4 previous and now the EDS significantly raised my risk over the 30% mark. I have a grandfather and uncle who both passed from EDS related myocardial ruptures. I was sent to see a specialist as well as a genetic counselor. We pieced together all of my symptoms, the hyper extensions, the dislocations, the pre-term labor and decided that I could not be allowed to go past 37 weeks gestation due to rupture risk. I never made it that far. 35 weeks. EDS causes pre-term labor through early ruptures of the membranes. If you have a vascular variety, it causes an irritable uterus which is what I have. I have contractions almost the entire pregnancy. I have a severely scarred cervix due to fibroid when I was teenager. Thankful for that scarring because most women with EDS struggle with incompetent cervix because EDS is a connective tissue disorder and our cervix is made 100% of connective tissue, so my contractions never caused a change in my cervix and I am unable to dilate. But the contractions cause major stress to the baby, causing a major drop in heart rate. After laboring for 8 hours with contractions at 2 minutes apart and every medicinal attempt to stop labor,  Bo was born at 6lbs 15 oz and put into a incubator an hour after birth. We did chest to chest almost immediately after my cesarean. This was first for me and so special. But his labored breathing worsened and they needed to get him into Children's Hospital's care immediately. Bo stayed in the neonatal nursery for 6 days. The first 2 days we weren't even allowed to touch him because it caused him anxiety and made his heart race. He had sepsis and jaundice pretty severely. However, after 2 days of immense prayer, it just cleared. Sometime that the nurses said never happens. Bo recovered so quickly that he was able to stay in the NICU at our little hospital and never transferred to the big house in Madera, another thing that never happens. Typically, babies are transferred within 48 hours to the big house. But I believe that the Lord took extra special care of our little boy and helped him heal and get strong quickly. This made it possible for me to see him every day and pump and give him my breast milk. There is nothing harder than seeing your baby hurting and struggling. I still have a hard time looking at the photos of him in there, I cry every time. Im crying while typing this out. But now Bo is doing great and growing fast. When we left the hospital he weighed just a little over 5 lbs, now he weighs 12. He is such a HAPPY baby, always smiling and rarely fussy. I was unable to keep nursing him past 2 months. I didn't make hind milk, so Bo wasn't gaining weight. I pumped and fed him lots of milk.....still lost weight. So we started formula and he has thrived since. I struggled with hind milk issues with Betsey as well. Life is starting to get back to normal. Bo is sleeping through the night, usually giving me at least 6 hours or more of uninterrupted sleep...which is amazing! I am beginning to get into a routine of schoolwork with London, and starting to be able to keep house and cook meals more regularly, husband is thankful for that :)
My recovery has been brutal, my incision is still not healed all the way. I can't wear jeans fastened yet, because it rubs against it and is so painful. But it heal, and all will be ok again. I've been a bit paranoid about leaving the house with the baby because it's winter and RSV is everywhere and the flu. We were treated to a trip to Disneyland for 2 days and kept Bo covered the entire time as well as dousing ourselves and our children in hand sanitizer. It was fun, but completely stressful.....I do not recommend this with a new baby. We haven't gone to church in weeks because there is always a sick kid (sometimes it's mine lol) who infects every one, and Bo is still pretty susceptible to getting sick. He is congested a lot due to an air allergy and premature lung development so we have to be really careful. Well sorry the longest post ever, but alot has happened. We are well, we are loving life and we are blessed :) here are some photos of Bo!










2 comments:

CARLY WELLS said...

I love this. You are such an amazing woman Nichole! And have the most beautiful family :)

Nichole Contente said...

thank you carly!