more about my angel

One of our favorite NNP Stefanie called me and let me know that there had been a change in Delaney, this was 4 weeks into the 6 week time span we were trying to wait to have her tummy surgery, baby girl had blood work drawn and it showed her platelet level had dropped from 240000 to 40000 over night and if you are medical personnel you are clinching your bottom at the sound of that... and even if your not a medical person that means something is using up all sweet peas ability to clot blood or blood was being lost from somewhere either way was not a good sign, and Stef had said her and Dr. Lisa were going to see if they could talk Dr. Carr into going ahead with the surgery and not wait any longer, thats all I needed to hear, I jumped up and we got ready, got Landon to school and then to Chattanooga we went. By the time we got there Dr. Blake our very favorite neonatoligist was on shift and he agreed we should press Dr. Carr, but if anyone knows Dr. Carr he doesnt press very well. He's a genius and I love him dearly. Dr. Carr agreed today is the day so within a few hours princess pea was on her way to her very 1st surgery and Tanner and I was scared crapless. We had been told that they had no clue how much of her bowel they would have to remove and there would always be the possibilty of strictures again once any adhesions were removed. But we dropped to our knees praying for hours and just clinging to the hope that our baby just had to be ok. She just had to. I will NEVER forget Katie and Dr. Blake coming out to tell us she was out of surgery and had done great.. I hit my knees again in prayer thanking the Lord for once again placing his healing and protecting hand around our baby. When Dr. Carr came to talk to us I just wanted to hug him and he looked at me like I had lost my mind :) once again you have to know Dr. Carr he doesn't hug. He told us he had to remove her ENTIRE colon and I about hit the floor, a thousand different thoughts were running through my mind, is she ok? will she ever be ok? will she ever eat like a normal baby? She was ok... she was perfect actually, Tanner and I went in to see her as soon as she was back in the unit and she looked like an angel laying there in her RADIANT WARMER! This was a big deal she had been in an isolette for what seemed like forever. The next few weeks she was still being fed TPN thru her central line that was inserted in surgery. I have never been more happy than when we got the go ahead to introduce milk again! And so the battle with her tummy issues continued. She would do so great for a little while but it seemed like once they would get to certain volumes her tummy would be like ok hold up I cannot keep up with you and they would have to stop feeds or back off them for fear of another intestial infection. It was 2 weeks after Delaney's tummy surgery, I had left for the day and called 2 hrs later like always to check on her and the nurse said ya know she's doing good , she got mad when they did her echo... I was like wait huh? Echo? Why did you guys do an echo? She said just to look for cor pulmonale which I KNOW WHAT THAT IS! So I start to freak and ask why I wasnt notified earlier? and did they think something was going on with her heart and the nurse said its just precautionary because shes been on the vent so long alot of baby's develop this after being on the vent but she said everything was fine no worries. So I didn't I never thought about it again. I come in the next morning like always to spend my day with my princess while my prince was at school, Im sitting in the rocking chair rocking her and singing to her having a great morning then Dr. Lisa comes up and tells me Delaney needs surgery! I FREAK! I am like oh no her tummy? what happened she's been tolerating her feedings well? thinking oh my gosh I cannot relive the last 7 weeks it has been torture.. and she stops me and said no its on her heart. WHAT!!!! What in the crap is wrong with her heart???? She explains that her PDA was open! It had already been closed previously but the stress of the NEC infection caused it to open. This was a freaking nightmare, I'm like but the nurse said everything was FINE NO Worries, Tanner is at the firehall and Landon is at school.. and you are telling me she needs heart surgery and she has to go today.. it was all too much to wrap my brain around. WE WERE TOTALLY BLINDSIDED. She went to surgery again with Dr. Carr and came out again like a rockstar. Dr. Carr came out and hugged my neck 1st thing he knew I was a total basket case. I will write more when I get a chance. :) Love you and miss you my precious girl