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November 19th, 2007, 08:36 PM
Mega Super Mommy
Join Date: Jul 2006
Location: KU Jayhawk land baby!!
Here is Carli's story:
This could get pretty long...just to warn you ahead of time.
I had a normal pregnancy with Carli all the way up until a routine u/s at 29w5d. My dr prefers to wait until at least 28 weeks for the big u/s to make sure everything is I guess formed to his satisfaction. We went in and had the u/s, and after a little bit, the tech left to go wash her hands and blow her nose, which I thought was odd. Nothing had been said at this point. I walked down to my dr's pod to see about getting some more heartburn medicine. Got that, left, got something to eat at the convience store and had Casey take me back to work. Well, as soon as I walked in the door at work, my dr's nurse was on the phone for me. She told me she had tried calling my cell, and that the dr wanted me to come back to talk to him, and to bring Casey with me.
Just to fill you in, just that morning I had the briefest thought of, "I hope everything is alright!" I couldnt quite explain it, but I had always felt there was something a little off. I bought cute little baby clothes, but never took the tags off, which is VERY unusual for me. We bought a new travel system, but I never took it out of the box, just things like that.
I got Casey to come back and get me, and we headed back to see my dr. We went in his office, and he looked like HE was gonna cry. I knew then that something was seriously wrong. He told us that Carli had a hole in her diaphragm, and that some of her stomach and intestines were in her chest cavity. The diaphragm keeps the lungs and heart separate from the stomach and intestines. Sometime around 8-10 weeks, the diaphragm just didnt close up all the way. With her stomach and intestines being in her chest cavity, it was causing her left lung to not have room to develop properly, and that it was pushing her heart over to the right, which was making the right lung not have room to develop properly either. He suggested that we see a maternal-fetal dr in Topeka.
We were informed that the name of this condition is called Congential Diphragmatic Hernia (CDH). We were told that Carli had about a 50/50 chance of living. The dr in Topeka really wanted me to go see a specialist at KU Med.
WE went and saw the specialist at KU Med. He name was Dr. Weiner (like a hot dog weiner!), and no I am not kidding, that was really his name. The only positive thing that came from that whole appt, was we got a good face picture of Carli, which we hadnt yet seen. Before we had even had the u/s done, he came in the room and told us that more than likely Carli had a chromosone defect, and that he really thought I should have an amnio. He basically told us that there was pretty much a 99% chance of the defect. We went in and had the sono done. I have never felt so horrible in all my life. He just seemed to keep throwing things at us. At first, he thought Carli had a cleft palate. Then he told us that she had a hole in her heart, but that it was in an odd place. He told us that her liver was rotated and that there was a cyst on it. That her kidneys were hooked together in a horse shoe shape, and that she had rocker bottom feet. All of this of course, along with the CDH. He then told me that he really thought I should do the amnio, which I thought was a good idea. He said that they would do a fish test, that would test the main chromosones that you see affected, and that we would have those results the next day. That ride home was the worst thing ever. He informed us that there was no need to meet with the drs from Childrens Mercy, which is where Carli was going to go right after birth. He was POSITIVE that there were chromosone issues!! He called both of my other drs to let them know what he found out.
The next day I went in to see my regular dr. He said that Weiner had called him and told him to just induce me (which wouldnt happen anyhow, since I have had 2 c-sections) and basically to let her die. At least I could have my family with me. My dr told me that we could do one of two things, go ahead and deliver here, which is a small town, and doesnt have a NICU, or any capabilities to save a baby like this, or I could deliver with the other dr in Topeka. It was a no brainer. Why wouldnt I at least deliver where they had a NICU, and my kids would have the chance to see there little sister alive. I waited for the results of the fish test. They finally called around 5pm that Friday. The genetic counselors words were this: :They came out SURPRISYLING (sp?) WELL!" That just pissed me off.
I had to wait a week I think it was to see the other dr in Topeka. He did another u/s, and told me he didnt see anything that that other dr had seen, other than the CDH. WE finally got the results of the amnio. 100% normal. They usually test between 20-40 pairs of chromosones. This man tested over 100 pairs. It was like he couldnt believe he was wrong!! We made the decision to deliver in Topeka with him. The game plan was for us to deliver 2 weeks before by planned c-section. So we made our appt with Childrens Mercy. They talked to us and showed us the NICU and where Carli would be. The game plan was for her to be intubated right after birth, and once stable, be flown to Childrens Mercy in Kansas City. Once there they would try to do surgery to fix the hernia, and put the stomach and intestines back in place. She would more than likely be on ECMO (a really scary machine, a heart/lung bypass machine) that would take the pressure off her lungs and heart, so that her lungs could grow.
That day we had her was one of the hardest days of my life. We went in, were suppose to have a 8:30am c-section. Well, I have some funky antibody, so they had to work on finding blood that I could have since I have had to have a blood transfusion with the last two. We finally get in to have the c-section. Carli Mae was born at 11:12am March 20, 2007. She didnt get to do a good cry, but she did make a few sounds as if to let me know that she was there. They kept telling me how good she looked. They took her to the NICU while they finished up the c-section. I had to be in recovery for 1 & 1/2 hrs. That sucked!!
They took me down so see her when I was finally done in recovery. At this point, all I have had is the spinal. I got to see her...and she was so perfect!! If you wouldnt have known any better, you wouldnt have thought there was anything wrong with her. Casey asked me if I wanted them to tell me what was going on. They had the team that was going to fly her up to Childrens working on her. The guy, John, told me that as of right now, things didnt look good. They were doing all that they could. I stayed down there for quite a while. Here I am maybe 2 hours out of surgery, and I am standing up, leaning over Carli's warmer. I think it finally started taking a toll on me, cuz I got really nauseous. I told the nurse I didnt feel good, that I felt like throwing up. You should have seen them scrambling to find me something. I did end up throwing up, but it was just that funky stuff in your tummy. I was really hot too, which makes sense since I had been leaning over her warmer. The NICU nurse told them to get me out of there, but John asked if I was ok, and that I could stay if I wanted to. I did end up going back to my room for a little bit, to rest a touch and take some much needed pain meds.
I dont know how long I had been up there, when the social worker came to get me. They wanted me to come see Carli before they took her to Childrens. I made it up there, and had just given her my pep talk that she could do this, and that I woul be there as soon as I could. One of the other people from Childrens came in and told me that they werent going to be able to take her. That they had done everything they could, but that there wasnt anything else that could be done. They couldnt get her PH levels stable, and that it turns out that the hernia was alot worse than they thought it was initially. Turns out that Carli had little, if no, left lung tissue. Without that tissue there was no way for it to grow at all.
That was hard! To hear them tell me that there was nothing that could be done. They told us that we could keep her on the vent as long as we wanted, but that the longer she was on it, the more pain she would be in. Casey and I had talked about this before. We knew what needed to be done. We made the decision to let everyone that had come to see Carli, see her one final time. We gave Mikaela the option to be with us when we took Carli off the vent. She passed on that. It is so hard to make the decision to take away the one thing that is keeping your baby alive. We got to love on her, and cuddle her for quite a while before we took the vent out. It was taken out at 10:54pm, and Carli was with us until 11:32pm.
After they cleaned her up and took out all the wires and whatnot, they brought her to us in a family room. We had everyone there with us. We passed her around so everyone got to hold her. I even got to give her a bath, and dress her in an outfit we had brought. The funny thing is, I almost didnt bring an outfit, because she was gonna go to Children's and wouldnt have needed one. We were with her until 2:30am that next morning when I decided that I had to get some sleep. It was so hard giving her to the nurse.
They were wonderful at that hospital. They offered to move me to a different area, but I decided to stay where I was. They just kept the door shut. They brought her into us at 10:30am the next morning, and she stayed in the room with us until about 10:30pm that night. We had people come and see us, and they got to hold her and love her. I know to some that it may seem odd that we all held her and loved on her, but I really do think it helps alot with closure.
We got to see her a little more the next day. We wanted to see her before the funeral home came to get her. I was dismissed from the hospital on March 22, 2007. It was so hard to turn her over to the nurse for the final time. It just isnt right for a mother to have to do that!!
I think that is all that I can do for now. That is pretty much our story. I wouldnt wish it upon anyone! I do have my very own Angel looking out for us. I told someone that sometimes it takes someone 87 years to do what they have to do here on Earth, and some people it only takes them 12 hours and 20 minutes. My dr from Topeka described it perfectly when he told us that for the rest of our lives, it is going to be like we are walking on a beach. There are constantly going to be be those little waves that lap at your ankles....and sometimes we'll get knocked off our feet by a huge wave. So far that has held true.
Our Angel on Earth for 12 hours and 20 minutes!!
7 lbs 20 in
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Carli Mae Montage #1
Carli Mae Montage #2
Thanks Sara for my great sig!!!
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