Bryson and Cystic Fibrosis part 2

Aunt Judy, Bridgette and I got to Emanuel Hospital around 2:30. We found out were to go and headed up to see Bryson.

We got there just in time to see him in another contraption/surgery bed thing. He was already prepped for surgery and headed that way, I didn't even get to touch him or kiss him good-bye, my heart broke watching him get wheeled away again!

A nurse showed us to a special waiting room, and we waited, and waited, and waited... it seemed like FOREVER.

Finally the doctor came in and told us that Bryson's obstruction was called a "Meconium Ileus" and it's not that common. It could be from Hirschsprung's Disease or Cystic Fibrosis. Bob's face went white, Aunt Judy said "oh No" and I was like "what's that?"  All the Doctor would tell me was to look it up if I needed to but not to get too carried away until we knew for sure. They had taken Bryson's blood and sent it in. The results should be in by the following Wednesday. Well, that didn't help! The surgery went well and as far as we could tell.

This post ended up being shorter then I anticipated and I'm sorry...It's very difficult to think about everything that we went through. I will finish this another day but I still wanted you all to be able to read this much, at least. I truly hope that writing this will help someone else. If for no other reason then to know that you are not alone. Finding out that your child has a disease that you didn't even know existed (or even if you did know)is a pretty scary thing.

Thanks for reading!!!

Bryson and Cystic Fibrosis part 1

This how our CF story starts...

Bridgette and Bryson were born at 2:09 am and 2:16 am February 3, 2010.

Everything was normal, or so it seemed... Both babies were latching on well and APGAR was perfect the second time for both babies.

Around 11 am Bryson started throwing up after nursing. It was sooo scary! We called the nurse and she told us that it's normal for preemie babies to have trouble at first. So we didn't think more about it... Until the next feeding...and he did it again only worse! He had green stuff coming out of nose and was turning BLUE! Bob ran out of the room SCREAMING at the nurses that our baby couldn't breathe and was choking. (Bryson also hadn't had a bowl movement yet) Bob demanded that they do something. So around 3:30 pm they took Bryson to the NICU for X-rays and observation. 

Bob went with Bryson and I stayed in the room with Bridgette because I was having issues myself and I couldn't really walk yet, plus I had to nurse and take care of Bridgette. Let me tell you...Having to be separated from your newborn like that is HORRIBLE, then I felt like I was having to choose between my kids made it worse, in addition to the fact that I hadn't been able to see the other kids (for fear of H1N1 kids under 18 were not allowed back)and I knew Tim was probably a total mess. (He worries about his Momma). My hormones were all OVER the place.  Saying I was a mess would be an understatement, but I had to be strong, I couldn't fall apart, I had things to take care of! So I kept it all inside, the best I could anyway.

I don't remember the time but Bob and the Dr. came back and said that Bryson had a bowel blockage and it wasn't something that they had the technology to fix so Bryson would have to go to Portland. Bob was with Bryson the whole time they got him all situated in his little(BIG) box thing. When the Ambulance people came in with Bryson in-tow....Oh my! I had never seen anything like it in my life! It was a good thing that my Amazing aunt was there to catch me, because I completely lost it. Bob would have been there but he was stuck behind the case Bryson was in. Bryson was peacefully sleeping in this contraption. It made me feel a bit better seeing him peaceful. They explained what the machine was and why he needed it and ask if I had any questions. They were very nice people, but it didn't change the fact that they were strangers taking my newborn baby 2 hours away from me. I had to let him go. Fortunately they let Bob ride in the ambulance to the next hospital.

Bridgette and I weren't suppose to be released until the following day but in light of everything going on, they reluctantly released me, with me making a promise that I would see my Dr. By Monday and have the Dr. at Emanuel check on me.  My blood pressure was really high, I was swelling pretty bad and more personal stuff was going on from just giving birth to twins. I signed the papers and we were off, My Aunt drove Bridgette and I to Emanuel Hospital in Portland.

More to come....Any of you have a similar situation? Tell me about your baby's birth.




Thanks for reading!!