Our appointment at CHOP went better than we ever hoped. We went into this appointment cautously optimistic. We knew we would be finding out more specifics about Ruby's condition. We knew we would learn her Lung to Head Ratio, more about the condition of her heart, definate knowledge of where her liver is. CDH babies have a higher risk of having heart defects, and the existance of one can effect the survival rate. Ruby's heart is perfect accept for the fact that it's getting squished to right by her stomach and bowel. The two major indicators for survival at this time (26 weeks gestation) are Lung to Head Ratio (LHR) and liver placement. Ruby has left sided CDH and we got confirmation from a Fetal MRI that her liver is down in her abdomen where it should be, which is good. Her LHR was calculated from High Resolution Ultrasound Pictures and was measured at 1.6. Anything over 1 is considered good.
On to the appointments, it was very long and hard day. Plus Philly is COLD compared to Austin in January. We are tough and managed to deal with everything that was thrown at us. Our original schedule was as follows:
Paperwork and Introduction @ 8:45am
MRI @ 9:15
Echocardiogram @ 11:00
Meeting with Insurance Coordinator 12:00
Lunch (Sandwich Box Provided)
Ultrasound 1:15
Meetin with Surgeon and Maternal Fetal Medicine Specialist 3:30
NICU Tour 4:00
This schedule got all messed up. The MRI took almost 2 hours total. According to the MRI technition Ruby was taking part in "Dance Party USA in my belly". The MRI was by far the worst of all the tests. The tube is very small. I'm not usually clausterphobic, but I had trouble at time staying relaxed while in there. Luckily I am tall and the very top of my head was out of the tube. I was able to look up at the ceiling whenever I got nervous. I have to say all the mental stuff I use while running marathons came in handy. I think it would have been easier had it not been so loud, I had to wear ear protection and couldn't hear anything but the loud machine. I also had to take my glasses off, so I couldn't really see. I was also strapped down to the board with a special coil over my belly. I've been having trouble with sciatica and laying flat on my back for so long was really the hardest physical aspect of this. I could feel Ruby moving a lot. Apparently the noise from the MRI really got her going. I did have pure 02 to breath which helped with the breath holds I had to do to try to get Ruby to hold still. Her little dance party through us off schedule. I didn't mind though, I love feeling her kick.
After the MRI, the Echocardiogram was easy. It was basically another ultrasound of her heart. It only took about 30 minutes. We did get to hear her heart beat, which I could listen for hours on end.
The meeting with Insurance Coordinator was really short. We basically got confimation of what we already knew. CHOP is in-network, which really is a blessing.
After our turkey sandwiches we had our third Level II Ultrasound of the pregnancy. Both of us enjoy seeing her. It's always worth the back discomfort to get see her on the screen, even if it takes two hours. Ruby must of worn herself out during the MRI, because she was laying on her right side and wouldn't move. They needed a clear picture of her right lung to calculate her LHR. The technition finally had me get up and eat some M&M's and walk around to try to get her to move. The most concerning thing about the ultrasound was that her long bones (bones in the arms and legs) are measuring small. They are measuring at about 23 weeks and we are 26 weeks. During our meeting with the MFM we learned that they aren't too concerned. She has no other soft markers for any genetic conditions. We are just going to continue to track her and see how things look when she is born. The Dr. did point out that Chris is not exactly tall, and it could be that she is going to take after her father and not her mother. Her weight and everything else is measuring right where it should be.
After the ultrasound, we got to meet the Maternal Fetal Medicine specialist. We were suppossed to talk to the Surgeon at the same but she was in surgery. We went ahead and talked to just the MFM. She answered all my questions reguarding delivery. We'll have to be in Philly by the time I am 32-34 weeks along. A regular "natural" delivery is prefered for everyone involved meaning me and Ruby. Although they don't want me to go much beyond 38 weeks. So if I don't go into labor by then we would most likely induce. Of course if anything started to go wrong they would do a C-section. The baby will be continually monitored to make sure she isn't in any distress. We just want what is best for Ruby. I really liked the MFM she acknowledged our long road of getting to this point. She was very compasionate and intelligent. She gave us 5 papers on CDH and talked to us like we are the scientists that we are. We both felt very comfortable with her. She confirmed that I would not beable to hold Ruby after she born. They will try to let me see her before she is taken away to be stabilzed. That was hard to hear, but again I'll do what I need to do ensure sure we get to take her home.
By this point is was after 4:30. We were told that we could come back the next day and speak with the Social worker and get a tour of the Special Delivery Unit and the NICU. We just needed to wait for the Surgeon to get out of surgery so we could speak to her. Looking back on it we should have said we could meet with her on Thursday also. She looked really tired when we met with her. I REALLY liked the surgeon, and not just because we share a first name. She was very matter of fact and I like that. She told us Ruby has a 90% of survival. She too mentioned she wasn't concerned about her being "short". Her advice for choosing between Texas Childrens's and CHOP was to go with our gut. She knows the surgeon in Houston and spoke very highly of him. She also told us that our daughter will most likely not need ECMO (Extra Corpreal Membrane Oxygenation (basically a heart lung machine for babies))! Which is really good news. The side effects from ECMO can be pretty scary. She will be on a ventilator. She also predicted her NICU stay to be 2-3 months.
We finally left CHOP around 6:30 ish.
Day 2, Thursday
After a full day of travel on Tuesday and the full day of testing on Wednesday, we were happy to not have to be at the Hospital until 11 on Thursday. Usually they do this all in one day, which after having been through it all, I can't imagine doing it all in one day.
Our Nurse Coordinator, who was awesome, gave us tour of the Special Delvery Unit. I would be able to deliver right there at the Children's Hospital. There are stabilization rooms attached to the labor rooms. There is a window in the dilevery room and Ruby would be passed through to a room with the surgeon, NICU docs, and whoever else needs to be there for Ruby. She would be kept in the room next to me until she is stabilized. Once stable she would be moved down to the NICU, two floors below me. The labor rooms have pull-out couches, so Chris would be able to stay in the room with me. The rooms were not as homey as some other places, but that's not what is important. The fact that they would stabilize her so close to me is comforting.
We had time to run across the street to Potbelly Subs for lunch before meeting the Social Worker. The Social Worker gave us a tour of the NICU. She explained all the rules and visitation policies. We would have access 24 hours a day accept for shift changes and if there is a surgery going on. Ruby's surgery to correct the hernia would be done right in the NICU. They block of the wing she is in and perform it right there. We saw two other babies with CDH. One of them gets to go home after only 7 weeks! I wish we could have talked to the Mom a bit more, but she seemed to be in a hurry. We saw a baby on a ventilator setup similar to what Ruby would be on. It was hard to see all the tiny little babies hooked up to so many things. I'm sure at first it will be much harder when it's Ruby attached to those machines. We were also shown the sleeping and breast feeding rooms available to parents. They seem to really promote breast feeding and have several freezers and refridgerators available for storage. Another plus is they have wireless in the NICU. Chris would be able to bring the laptop in and work from Ruby's bed side.
After the tour we talked to the Social Worker about housing options. She gave us the name of an apartment complex that has month to month furnished apartments. She also arranged for us to tour the Ronald McDonald House. We were pretty sure it wouldn't work for us since Chris needs to be able to work. We did go on the tour and found out that they don't put desks in the rooms. For some reason they thought Chris could work in one of the common rooms, which isn't really a possibility. We did go look and I'm glad we did. It's safe to say that the RMH is not a good fit for us. Another problem is that we wouldn't be able to stay there until after Ruby is born. We couldn't stay there for the month before delivery that I need to be in town. Also, once your child is released from the hospital, you have 24 hours to vacate, but Ruby will need to stay in town at least one week for followup visits and "just in case." The RMH serves a good purpose, but it seems to not be geared towards long term stays where one or more parents needs to concentrate and work "from home".
That concludes our two very full days at CHOP. We have the same tests tomorrow at Texas Children's Hospital in Houston. Then we have to decide where to go. Luckily, our insurance covers both places. We are very greatful that we can take the money factor out the equation. We hope to make the decision by the end of the week. That way we can start planning and coordinating my care with our doctors in Austin.
We'll update in the next couple days reguarding our TCH appointments.
