I am sorry this update is so delayed. It has been a whirlwind emotionally and physically.
We arrived in Omaha for our doctor's appointments Thursday evening (October 25th). My mom came with the kids and I so she could help out taking care of them while we were with the doctors. Brad was already in Omaha since he had been working there all week. We had a reservation to stay at the Rainbow House which is for families with children at the Children's Hospital. Our baby is not technically there yet but they said it was not uncommon to have families like us stay when we came to town for appointments at the hospital.
We met with the perinatologist first. He was great. He was knowledgable on the subject and reassuring. He did not push an amniocentesis and never mentioned terminating, like the doctor at KU Med did several times. Brad and I were both shocked to see that Livvy's entire stomach was now, not only in her chest cavity but was side-by-side with her heart. Her heart is now pushed all the way to the right. It was such a dramatic change from the appointment less than a week earlier. Dr. L. was also concerned about her heart functioning. He said it did not look as "dynamic" as he would expect. He said he wanted us to see the fetal cardiologist but that it might be when we returned to see him in 2 weeks, as he was hard to get into at times. He also talked about the possibility of having to take her early if her heart was showing signs of problems as we progressed.
We left there quietly, just looking at each other. She looks so sweet and 'normal' but has so many problems. We were heading to meet with our neonatologist when Dr. L's office called and said that the fetal cardiologist would see us that day at 2pm. It was great to know we would get into him so soon.
The neonatoloigst was also wonderful. Dr. A is very experienced in CDH. He was very optimistic and reassuring to us. I told him how startled we were to see her stomach beside her heart now. He told us not to worry too much about that. He was straight forward with us about their success rate. Overall, the babies they do lose with CDH had other serious problems, chromosonal or otherwise. Another baby was too premature and was not able to be put on ECMO and other attempts failed her lung functioning. Although it is always hard to hear of a child loss it was reassuring since Livvy did not appear to have any other major problems, although we had yet to meet with the cardiologist. Dr. A talked to us about the team approach and how all our doctor will work together. We knew he was dedicated to giving us the best care and he even came in on his day off to meet with us that Friday.
Following our time with Dr. A we were given a tour of the NICU. It was hard but also comforting to see the measures that will be take for our little girl. The charge nurse was so nice and introduced us to the other charge nurse who will be on Livvy's floor when she arrives.
So, we went back to the Rainbow House, checked out and headed to meet the lady with the house we were going to rent. The house was perfect with a decorated girls room, boys room and a nursery room space that was attached to the master bedroom. It would have been perfect for Aria, Miles and Livvy. When I finished looking at the house the lady told us that they had an offer from Google to rent the house for some execs coming to town and although it "was not about money", they were offering to pay more. She had previously mentioned the google people when SHE contacted us from our craigslist ad but said that she would rather rent to us. It was a big blow just prior to us having to return to the hospital to meet with the cardiologist. On our way back to the hospital we called the Rainbow House to see if we could stay another night since we would have to find a home before going back to Wichita. They said that was fine and gave us the same room we had before.
We headed to meet Dr. D, the cardiologist, at Children's Hospital. It was pretty straight forward. The tech did the Ultrasound and sent him the images in his office. He came in and told us that her heart looks good and normal (accept for its position of course). He said he would pass on the info to Dr. L. and tell him that he is "cautiously optimistic" and we will rescan in mid December to make sure everything is still alright. That was the good news we needed following the days events.
I will skip ahead so as not to bore everyone. We had a hard time finding a house and were were all on edge when we decided we had no choice but to head back to Wichita. It was Saturday afternoon and the home prospects were at a dead end. I was driving mom and the kids and Brad was following us in his car. From the moment we left Omaha I had a braxton hicks contraction. Ok, not a big deal. Well, they continued every 3 minutes, almost like clockwork. Every time I got one I looked at the clock. They seemed to be getting longer and a little stronger. While I still considered them to be braxton hicks I was still concerned about the regularity of them. I decided to pull off in Lincoln and walk around somewhere to see if they stopped. They did not and seemed to intensify. I called our perinatologist office and spoke to one of his partners. She said to come back to Omaha. That was the longest car ride of my life. I was so worried knowing that if she came this early she would have little chance, given her condition of making it. I had little personal conversations with her about staying put. It seemed like one long contraction the whole drive back to the hospital. We spent that evening, in the hospital, on the high risk floor waiting for the doctor. They had an emergency delivery so she was delayed. Livvy sounded great on the monitor and my contractions continued although not as regular as before. The doctor eventually performed two tests to determine my chance of labor within two weeks and the length of my cervix. Both tests came back with good results but she stressed that I needed to remain in Omaha for the safety of our baby. This occuring again while in Wichita would have meant a helicopter flight to the hospital in Omaha. She talked a long time about the risks to our baby which we completely agreed with and understood. She went ahead and released us that night and we got back to the room at Rainbow House around 11:30pm where mom was with the kids.
The Rainbow House knew the situation and said we could stay there until we found a home. I really don't know what we would do without them. So,the next morning, Brad and mom headed back to Wichita to get the immediate things we would need like clothes (we only had 2 days worth) and toys and things for the kids. Their home suddenly became a room the size of a hotel room. Brad came back up on Monday so he could get back to work and be there in case something happened with me again. Two of our friends, mom and two of her friends and several other recruited individuals worked during the week to get the rest of our house packed up. I don't know what in the world we would do without everyone.
I had been teaching a class at WSU on Wednesday afternoons and planned on finishing the last four classes online. My advisor and other professors however told me not to add that to my stress and got someone else to cover the remaining four classes. I hated having to do that and that was my greatest stress about not returning to Wichita. My department however made it all easier and they have been very kind.
We continued throughout the week to look for homes and still had no luck. Crissi, my sister-in-law came up from Arkansas for two days to help with the house hunt and the kids. She was a HUGE help. The Rainbow House (while still wonderful) seemed to be getting smaller. The kids were getting stressed, as were we. On Friday I placed another ad on craigslist explaining out situation. The first response I got that afternoon was from a woman whose son had been trying to sell his home for several months. She said he was interested in renting it. She also said that she had never been on craigslist before that day and felt it was meant to be that she found our listing. We met them that night and that following day (this past Saturday) we finalized everything. Our friends, Mark and Mary arrived Sunday afternoon with a Uhaul of all of our stuff (minus the two dogs and cat who are being cared for temporarily by other people).
So, we are in our new home. It is really nice and unpacking is coming along. I am adapting to life in Nebraska, as I have never lived outside of Kansas before. They have many streets where you cannot make left handed turns, the trash service is free through the city and they sell wine on the endcaps in Target. This is all very strange for a Kansas girl.
We have our next appointments on Friday. We will meet with our perinatologist again and then with the surgeon who will perform Livvy's surgery. Following this week we will likely go to weekly appointments. I am so anxious before we meet with the doctors not knowing what we will find out about our little girl. I will update everyone after Friday and I promise it won't be as long this time since we are in our own home now.
I can't thank everyone enough who helped with our sudden transition. Without friends and family to help house hunt, pack our stuff and provide the emotional and moral support we so desperately need right now we would be in a much darker place.
Thank you everyone for your continued support, prayers and concern.
Pain in her Side.
1 month ago