We got the nusery painted the week between Christmas and New Years. Seans parents were here and were a HUGE help in getting things done. The bassinet is set up and waiting in our bedroom and I love it. It is a pretty cream and black toile print. The nursery is a tiffany blue and chocolate brown and I love it. We ordered the crib and there is a nice Amish man in Ohio making it for us now. We are still waiting for wood samples of the stains to pick out a stain, but the crib is a mission style that converts to a toddler bed and a full size bed. The pictures are of Seans parents helping with the nursery. Sean's mom helped clean out the messiest room in my house. It had become a catch all and had all sorts of stuff in there. Then we taped off the lines and Sean and his dad painted. I stayed in another room, but came in to take pictures. Garrett and Barbie were big helps in this process, they loved the plastic on the floor.
We had an ultrasound and nonstress test Friday. The amniotic fluid is fine. It was 11cm and 10 cm is normal. The kidneys measured fine and the baby's bladder was full so all is well from that standpoint. With the nonstress test, they gave Sean toy to play with. Sean talks to the baby every night and the baby will push on his hand and move around. The baby knows daddy. So the test was during the time when the baby is usually asleep so Sean started talking to the baby, and when Sean would talk, the baby's heartrate would go up and the baby started pushing on the monitor strapped to my belly. It was really funny. I was glad that Sean could see how much the baby responds to him. He would talk and the heartrate would go up. He would stop and the heartrate would go back to baseline. This will be a daddy's baby.
This is a copy of an email Sean sent out. With me you get the emotional venting, but here is pretty much what we found out.
I would like to give you an update on my wife’s pregnancy after our visit to Little Rock last Friday. Although we received confirmation of the initial diagnosis that our child has a double outlet right ventricle (DORV), the rest of the indicators were predominately negative. Assuming correct interpretation of the size of the right ventricle test, the child has between a 2.28% and 0.13% (z = to -2 to -3) chance of undergoing the patch procedure at two weeks of age. Fluid was noted around the heart. Size of one of the veins leading to the lower extremities was dilated. Amniotic fluid levels were slightly low or requiring monitoring. The child’s kidneys were enlarged slightly (5mm). Through continued consultation, it seems that that we are going to rely upon birth to determine the final surgical outcome. Again, Monica and I thank you for your continued thoughts and prayers.
Like I said, he can state facts without the emotional stuff taking over. So pretty much they don't know if we will be able to have the one open heart surgery or the three open heart surgeries. The growth of the left ventricle is so important right now. They just cannot determine if the left ventricle is adequate until they are able to do an echo on the baby without going through me first. Dr. Laws got some more info about the amniotic fluid and he was given a range that really was not that bad. I will have another ultrasound and a nonstress test on Friday to make sure everything is ok from that standpoint.
The baby is growing and moving like crazy. He/She is 3 pounds right now and measuring great as far as growth. That is really a good sign and something I am holding onto. Please keep us in your prayers. It is really all that is holding me together at this point.
Our church is doing a new sermon series called Shout or Silent. It seems like I cannot make it through a service without crying anymore and today was really bad.
Friday when we went to Little Rock we saw a different cardiologist, we were not prepared for that and we also saw the doctor that we really were not very impressed with again. The new cardiologist was not a bad thing. She is the cardiologist for some people we know and they love her so Sean was happy to see her just because the other baby has done so well and the family really likes her. She also gave us some news we did not want to hear. They really cannot tell much about the left ventricle. The baby is getting too big to trust what they are seeing through me. It is all about angles. Some images they get look fine, but some the LV looks small. They really have no way to know until the baby is here and they can get images straight from the baby. She knows how to communicate with Sean though. She gave him some Z scores and information that his analytical mind understands, me not so much. Sean had to explain a lot to me after she left.
The other doctor came in and continued with the ultrasound. I had been on the ultrasound table for two hours at this point and Sean had them bringing me water so my bladder was quite full and it is not really convenient to get up and go to the bathroom. Four different people come in and do ultrasounds and my belly is covered in goop and they don't clean me up in between, or give me a towel or really time to clean up. They just keep adding more goop and keep going. So she started measuring things and my amniotic fluid is low. She told me this then started looking at the kidneys. They usually measure around 4mm, this baby's kidneys measured around 4.5 mm but she was not all that concerned. I mean she took a personal cell phone call and argued with someone about how she could not take a call right now while doing all of this so I am figuring she was not too concerned with what was going on. She told me to call Dr. Laws and get in this week so he could monitor the situation. The baby will need a non stress test and I guess more ultrasounds to measure amniotic fluid. I will be calling his office at 8:00 Monday morning because I know he will take care of me and the baby and I know this will concern him and he will find out answers to my questions.
This is where the Shout or Silence comes in. I have not really wanted to talk to anyone since all of this. I sat in the car and cried when we got done Friday because I felt like I walked out with more questions than answers. They did not schedule my induction like I was told and they did not schedule the visit to the cardiac ICU like I was told and I was just to frustrated. Frustrated and angry. I was talking to a friend at Gracie's basketball game yesterday about how frustrated I am and she told me that I am my baby's greatest advocate right now. I care more about this baby's care than anyone right now and I was going to have to stop being nice and do what I had to do to get some answers. She is right. Now is the time to shout. That is why the sermon today hit me so hard. It was about how to deal with someone who you feel has wronged you. While Ed was talking I was figuring out what I was going to do for my baby and I was crying. I will take this step by step and if the first step does not work I will go on to the next step and the next. This baby will get the attention he/she deserves and the care that he/she deserves.
Thank you for your prayers and emails (and taking over my class Michelle) I have really needed them. Please keep praying.