ECHO and Childrens Mercy

Looks like a Vorthmann nose to me!
Heart on the Right Side - Stomach on the Left.

May 14, 2008- 25 weeks 2 days

1:00 today we went to meet with the coordinator at Children's Mercy in Kansas City and to meet the surgeons that will be performing surgery on our baby girl after she is born. We had a pretty hard time getting past the security guards at the front doors, but after that everyone was so nice. We met with the ECMO coordinator. ECMO is a kind of life support that babies with CDH sometimes have to go on if they are unable to oxygenate their blood enough by themselves ( which is my biggest fear). I have seen other babies on ECMO and the site is very sad to say the least. Anyways we will deal with that if we have to. The surgeon that we met with was very nice but made it a point to tell us over and over that they would not know how long it would be before she would have her surgery. That would be a day by day judgment call made by the surgeons and the neonatologists. He said that surgery is not the main focus, keeping the baby stabilized and oxygenated was. Surgery can wait and it could be up to a few weeks before she would be ready for the surgery.

We toured the NICU to see where she would be going as soon as she was transfered from St. Luke's since I cannot deliver at Children's Mercy, the baby will be transfered within about 2 hours after birth to Children's and I will have to stay at St. Luke's until I am stabilized, but that they do offer passes for moms to come over and see their babies as soon as it is determined that the mom is stable. At the NICU we met Sophia, a baby with CDH that was going to be soon going home from the hospital . She had been in the NICU for almost 2 and a half months, but looked so cute and seemed to be doing well. Her dad looked at Brian and said, "It's a long road, but it is so worth it"

2:45 and now it's time for the ECHO, to determine if there is any heart abnormalities that can be determined before birth. This is where they look at all the chambers of the heart and all other anatomy of the surrounding arteries and veins coming into and leaving the heart. This was yet another type of ultrasound. I guess the spicy chicken salad I had for lunch was a bad idea, because our little girl was on the move. She was kicking and punching and would not stop moving. They got most of the pictures that they needed but not all of them because she wouldn't really cooperate. Hope that is not a precursor of how she is going to be when she gets older!

Once again we were led to the "Crying Room" to discuss the results with the doctor. A cardiac perinatologist came to discuss what he had seen. He said that the ECHO showed a strong 4 chamber heart (good!), all vessels entering and leaving the heart in a normal manner (great!) and that the patent ductus arterosis PDA and the foramen ovale were both present and functioning (greatest!). Basically these two shunts are necessary during fetal life but close once the baby is outside of the mother. We just got as normal of an ECHO as possible which is the best we could hope for.

We took a quick tour of where I would be delivering (all the way at the end of the hall by my self in a huge room where there was enough space for the 12 or so doctors and nurses that would be there during the delivery) and the NICU where the baby would go until stabilized enough to be transferred to Children's Mercy. They said that as soon as she is born that they will call the Children's Mercy transport team to come get her, and they would stay at her bedside helping until she was stabilized enough to be transported even if it took 5 or 6 hours. They said that their transport team was one of the top the nation, and that Brian would have to follow right behind the ambulance to do paperwork at Children's Mercy, leaving me behind at St. Luke's.

During our walk through, Dr. Gray who had also looked as the ultrasound came to give us some more news. He said that it looked like on this ultrasound that the liver was indeed "up" (aka-super bad news), and the the LHR was 1.2. Wow, in a day of highs, this was an extreme low. These were both really bad bits of information. Things aren't looking as good as they were when we had walked in the door. Also, Dr. Gray said the the LHR the low level was 1.4 instead of what we had been previously told of 1.0, so I will have to research that more to determine what is right. He said that he wanted us to come back for another ultrasound in 3-4 weeks to make sure that she was growing, which she was she is up to 2lbs 2 oz. I couldn't believe how big she had gotten in 3 weeks. At the last ultrasound in Kansas City she weighted 1lb. 4oz. so she gained almost a pound! Also, they have been monitoring my amniotic fluid level, which can sometimes get high because the baby is unable to swallow the amniotic fluid as well because of the displaced stomach and bowel, but today my level was within the normal level.

Discouraged we made another appointment for June 18, 2008. Of course we were both frustrated because we had not thought that things would change so much in 3 weeks, but I guess, as the baby grows, so does the diaphragm in proportion, allowing a larger opening, and thus possibly the reason the liver looks like it is up. Brian and I decided the the LHR might be a little bit of a judgment call by wherever the click of the mouse is on the ultrasound picture, because it is so blurry and she was moving so much...hopefully this isn't going to be the standard, lower LHR and worse news each time we go. Another long trip home from Kansas City to say the least.