Our visit to IU Med and our Amnio Results

Well it’s been a week since our appointment and a lot has happened since then. I'll try to remember everything. The day of our appointment started pretty well the 3 hour drive wasn't too bad. I slept most of the way we had to be up around 4:30am. Andy and I were in good spirits we had good conversations in the car and everything seemed going our way. We showed up at the hospital and found our way at IU Med and signed in. I was pretty prepared with all of our paperwork insurance cards and one of my favorite things a build-a-bear recorder. (Thanks Casey!-My best friend Casey and I were talking weeks before and I was telling her I would get nervous about going to our OB appointments afraid of not hearing the baby's heart beat. So she got me got me the recorder to put in a bear so I could hear the baby's heart beat whenever I wanted. I was very touched by this and it meant a lot to me.) Well, while sitting in the waiting room I started to get anxious, so much was going through my head. I thought what a blessing it would be for the baby's omphalocele would be small or better yet gone, then I would think what if they tell us he has trisomoy and won’t live, or how long he or she would be in the hospital. Andy noticed I was getting upset he just said" breathe through your nose and long deep breath and relax. I was trying so hard but the tears couldn't seem to stay in. I seemed to pull myself together and we were called into the ultrasound room right away. The nurse explained she would go in and do measurements and look at the baby's body scan, then the Cardiologist would come in and do an extensive ultrasound of his or her heart, and finally or Doctor would come in and explain everything they saw.  She started the scan and she asks do you know what you are having and do you want to know. We both replied “We want to know!". She started the scan and the baby was in a weird position and already head down. I didn't take but a couple minutes and she said “I see his little penis!" It's a boy! We were both shocked we thought we were having a girl. I couldn't stop smiling we really didn't care either way, but I knew Andy was proud. She showed his stomach and right away we could tell the omphalocele was still there it seemed pretty large to us. By the ultrasound it looked as large as his stomach cavity. It was a little nerve racking because we know the ultrasound tech couldn't tell us anything, although we know a lot of terminology and what to be looking for already. I did ask her is that the omphalocele and she said yes. We did get a somewhat normal rest of the ultrasound she showed us his profile, feet and little hands. In his profile picture he was sucking his thumb again. I think he's going to be like his cousin Zaine:) this is twice now we've caught him with his thumb in his mouth. Being at IU med we did have a couple different students in viewing the ultrasound. I really didn't mind. One of the girls was doing the scan and she was pointing some things out then said " Oh there's his boy junk again" We started laughing.  She kept trying to get a view on the umbilical cord. I started to get concerned. From previous experience when they keep going over one thing , they are concerned. They stopped the scan and said the Cardiologist would be in shortly. They left the room and Andy and I had a chance to talk. I just kept saying " Can you believe he's a boy" Then I said I think something is wrong with the umbilical cord. He didn't really know what to think. All he said was It was sad because of all the unknown , any other time he would be jumping for joy he is having a boy, but it’s still scary and he just wants to have a healthy baby. I agreed I too feel like it’s hard to be happy when it could all be taken away in an instant. The cardiologist came in with three other Doctors. She explained she would do the scan of the heart and then explain her findings and have our main Doctor come in to explain. She started the scan and didn't say much the whole time, I was starting to get nervous. I would say about 20 minutes went by and she started talking. She explained his heart was fine everything was in order but it was on the wrong side of his body. Normally our hearts are on the left side his was on the right. I ask why that would be she explained he has a diaphragmatic hernia :

A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm, the muscle that helps you breathe. The opening allows part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity near the lungs.
http://www.nlm.nih.gov/medlineplus/ency/article/001135.htm

She verified since the hernia was present his intestine were in his chest cavity and moving his heart to the wrong side. She said there is no concern to have the heart on the wrong side. But the major concern would be since the intestines are in his chest. The growth of his lungs could be affected. If this is the case it could be deadly because there is no way to help the growth of the lungs once he comes out. She also said it would be impossible to know the growth of the lungs until he is delivered because lung tissue does not show up on an ultrasound. I was pretty shocked, once again we came for one thing and ended up with something new. She said with this abnormality, it was possible his defects could be linked to a syndrome : such as downs or trisomy. I asked her about the umbilical cord she said normally they are 3 veins or arteries in the cord he only has 2 and this could be a marker for a syndrome. It seemed as if everything was started to head towards our baby having trisomy. I just wanted to crumble. The Doctor came in and explained everything to us. She was very supportive and very informative. She said the biggest concern is the  diaphragmatic hernia, she stated babies with this are very sick and need a lot of help. She said with this abnormality babies have about a 50% chance of living. My heart broke when she said that  because that wasn’t the only thing we were dealing with, he still had the omphalocele to deal with too. The Doctor explained the omphalocele will have to be put on the back burner at this point until we get the hernia repaired. She did say the only thing in the omphalocele was the intestine and if they remain the only thing in the omphalocele I could deliver him naturally. This was the least of my worries but at least having him naturally I thought maybe I'll have a better chance of seeing him before the haul him away. We decided to go ahead and do the amniocities to check for the possible syndromes. We met with the Genetics counselor and she explained the possible syndromes he could possibly have. It was like I was at our 1st appointment all over again. I didn’t say a word. I was in shock. I couldn’t believe we talking about the what ifs and all the possibilities. She was reassuring and told us it's still possible he wouldn’t have any other chromosome abnormalities. I just had a black cloud over me and couldn’t get that out of my head.  They took us to the ultrasound room again where they were prepping for the amniocities. I started to get nervous , from all the stories I’ve heard it hurts a lot and can startle the baby. I just didn’t him to be scared too. I laid down and the tears started again. Andy was holding my hand he said” I don’t know if I can stay I might pass out”. He hates needles. I said I can’t do it by myself he said “I just won’t look" I agreed and said I wouldn’t either. We both just closed our eyes.  The Doctor had two rules don’t pull the needle out and breathe. So I just concentrated on breathing and honestly it wasn't too bad. It felt like a regular shot just will a little more pressure. About a minute later she was done. Right when she went to pull the needle our he tried grabbing for it. I don’t blame him I wouldn’t want that in my home either. After about ten minutes they released us to go home and said if I had any bleeding , heavy contractions, or my water was to break to turn around and come back to the hospital. I was thinking , “ its three hours away, that’s crazy” One thing that did hit me before she did the amino was she said if he did have trisomy or other deadly abnormalities a lot of times they baby will just pass and I would deliver. That wasn’t something I wanted to think about. I knew the rest of the day I would be on pins and needles thinking about the idea of delivering him that day.  If he was going to pass I wanted to at least see him full term and be able to hold my baby.  The ride home we really didn’t say much. I was exhausted from thinking too much and just wanted to lay down. Thankfully I didn’t have any contractions or any other complications from the amino. The Dr told us we would have the results in 24 hrs. We did the amino about 10:30 so the waiting started. The rest of the day I laid in bed and tried to sleep, but  most of the time I couldn’t. I didn’t cry too much, I just kept praying “ Please God let him be ok and able to grow up a normal child after all this is over.”  The next morning was pretty rough. I woke up early it was nasty and rainy outside and I just looked like a movie was playing up to something bad happening. Again I just stayed in bed all day. The phone rang a couple times and I thought I was going to have a heart attack every time. Andy and I had agreed we’d put the phone on speaker so we would both get the news. Noon rolled around and we still didn’t hear anything Andy was getting anxious and wanted to call the Dr. office. I said they’ll call. I wasn’t too anxious to call them I think I was just afraid of what they might say. There was one point I had a total melt down, Andy came running in the room and said “what’s wrong?” I had so much going through my head I felt like I was in a subway station. I  just said “ I’m scared” He said “ I am too, but we’ve got to stay strong and we’ll get through this. He rubbed my back for a while until I was starting to fall asleep. I finally woke up about 2:00 and still no word. Andy was ready to call then about 10 min later the phone rang. I think my heart stopped . Andy picked up and the nurse asked for me. Andy handed me the phone and put it on speaker. She said “ I have good news!”  Andy and I just started bawling. She said he was negative for the big trisomy 13,18, and 21.  She said for us to have a good thanksgiving the next day and we would have the final results in about 7days. We were so relieved I think we both cried  for the next 10 minutes, and Thanked God  for the blessing that  just happened. The last 24 hours were the longest of my life and the most overwhelming feeling ever. Good or bad I don’t think Andy or I will forget what we felt like that day.
          Thanksgiving went well we had a good time with our families and to our relief we were able to share our good news with everyone. I did have a small meltdown at our Thanksgiving. There were small children everywhere. I was fine with watching them and actually enjoyed it but one of our cousins had a two month old baby girl and her mom was holding her and asks if I would like to hold her. I just shrugged it off and said “she’s sleeping, Its ok” but she insisted I get some practice. She is a distant cousin and she didn’t know what we had been through. She put the baby in my arms and  I immediately felt overwhelmed. I played it off well and held her as I would any other time. It’s when I touched her little hand and she grabbed by finger when I lost it . I kindly gave the baby back in a hurry . The she walked away. Andy just looked at me like he was happy I was able to hold her and that’s when the tears started I never made a sound but I was bawling inside. Andy Just rubbed my arm and said he is going to be ok and you will be able to hold him too. I responded “ I knew that would happen , I didn’t want her! He could tell I was hurting. I pulled myself together and the rest of the day went much better.  
The rest of the week went well. I felt good about everything that  had happened. The anxiety was still there but was back to when we first found out about his omphalocele. At least he still had a chance and I could stop thinking about having to plan a funeral right away. I was even ready to start getting the baby room ready. Andy got  a call Tuesday from our genetics counselor and she gave him the rest of the amino test. She said all 46 chromosomes were normal and there were no other abnormalities. She said she would schedule or next appointment and we would be able to meet the surgeons and other specialist that would be working on him at birth. We would also get a tour of the NICU. Andy called me with the good news at work and I started crying again. I think I startled one of the girls at work, but I reassured her I was crying because I was happy!