Thursday, August 28, 2008

Surprise Baby Shower

On August 24th our Dachshund meetup group surpised us with a Baby shower at the Dog Park. We were surprised! We had so much fun watching the doxies play. Molly loved getting treats from everyone.

Monday, August 18, 2008

Update on Doctor visits on August 5th and 14th

On August 5th, we had an appointment with Dr. Olaje Idowu. Our regular Dr. said it was necessary for us to see him before we could be referred to UCSF. We had to wait a week for this day to come, and it was quite stressful as we had learned medical centers stand to get a lot of money to deliver a baby like Nayeli. We have been told it is upward of 1 million dollars per CDH baby.

We had thought our regular Dr. could refer us to UCSF for regualar delivery, but since we had declined to do the tracheal occlusion surgery, Kaiser decided to evaluate if they could deliver Nayeli. After our meeting with UCSF, minus the surgery Dr Lee, we were very confident and comfortable UCSF was more than prepared to deliver Nayeli. So, this meeting with Dr. Idowu loomed over us like a rain cloud. We were very scared he was going to pretty much demand Kaiser deliver our daughter and they would transfer her if she needed ECMO. We were not satisfied with this thought, even though it had not happened yet. We both spent restless nights with lack of sleep worrying about this impending appointment. It didnt help matters that I went online searching for info on Dr. Idowu and couldnt find much at all.

So, we had the meeting and it appears all of our worry was for nothing, ofcourse after the Dr. decided to show up two hours late and Shane had worked a night shift with no sleep. We pretty much told him how comfortable we were at UCSF and explained what we knew about CDH. Dr. Idowu pretty much said he was not sure why we had to meet with him. He said he did not have a problem with us delivering Nayeli at UCSF.

So, we stressed over a whole lot of nothing and things worked out for the better. Another day with God in our corner!

After our meeting with Dr. Idowu, we met with our regular Dr. on August 14th. This appointment was to discuss our visit with Dr. Idowu. The appointment was at 1:30 pm and Shane had worked a midnight shift the night before. When appointment time came, Shane was not there and I started to feel anxiety. I feared Shane had overslept and I started calling his work phone it was turned off, personal cell it was turned off, and the house phone. I had left him a message pretty shooken up because I am so used to him always being there for every appointment to support me. This was the first time he had missed or been late to anything. I prayed and asked God to give me the strength to go into the appointment by myself. I left him a message asking him to not be too hard on himself about missing the appointment because I know he can be that way to himself. Shane woke up and called me telling me he was on his way. Luckily, the Dr. was running really really late today, perhaps an act of God so Shane did not miss the appointment. Shane turned a 20 plus minute drive into 10 minutes including parking in the garage which usually takes forever. He did this by of course driving the speed limit and he even drove in the car pool lane when he wasnt supposed to. He walked into the appointment when Dr. Maier had just started the ultrasound. I tried to stall the Dr. as much as possible when I knew Shane was on his way.

So, during this appointment, Dr. Maier told us he had talked to a nurse at UCSF, who told him they no longer need to measure Nayeli's Lung to Head (LHR) ratio. He explained this is no longer needed because it is stable and things have not changed. We are not too sure about this and had never heard of a Dr. stopping the LHR measurement. We understand what really matters is when she is born, but the LHR measurement is like positive fuel for us to somehow try to gauge how our daughter is doing. So, I called back and asked the Nurse what the LHR was from this past meeting. She said Dr. Maier wrote it was 1.8. So, so far we have been as low as 1.0 to 1.1 when we went to UCSF in July., we got a 2.0 a few weeks ago, a 1.6 two weeks ago and now the 1.8. Dr. Maier noted no major changes and said everything is right on par with our daughter, to include her size. The Dr. said Nayeli weighs about 2.5 lbs right now and her growth is exactly what it should be for 28 1/2 weeks.

The Dr. also told us we will be coming in one time a week starting September. The Dr. will also be doing the stress test once to twice a week on me starting September 5th.

Shane and I want to thank Terri and Brian for being there for us. Terri, especially when Shane was late for the appointment. Thanks so much. Elizabeth thank you for your support and information you gave us to be prepared with the Pediatric Surgeon. To everyone who has continued to support us and pray for us. Thank you. I dont how we would get through this without support and prayers from wonderful folks like yourself.

Saturday, August 2, 2008

Dr. Appointment 26 1/2 weeks

We had an appointment with Dr. Maier, on July 31, 2008. Our Dr. has been great throughout this process, but had some less than favorable things to discuss with us today.

He told us he had a meeting with other Kaiser professionals and they discussed our daughter. They have decided we have to see a Kaiser approved specialist before we can be referred to UCSF to deliver Nayeli there. Apparently, since we did not opt to do the tracheal occlusion surgery, Kaiser now wants to evaluate our situation to determine if they can deliver her. We are not fond of this idea. We had a great meeting with UCSF staff and they filled us full of confidence. Now we have a meeting with Dr Idowu, a Pediatriac Surgeon at Oakland Kaiser this Tuesday. This is pretty frustrating for us as we now have to meet a new Dr. who we know nothing about and feel as though we are kind of starting over when we were very comfortable with UCSF. We voiced our opinion to Dr. Maier and told him how we felt. Dr. Maier reassured us that this is a consultation but feels strongly that Nayeli might not need ECMO from a conversation with Dr. Idowu. We don't know how many CDH babies Dr. Idowu sees a year. We know that UCSF is known to see over 30-50 CDH babies a year.

We went home frustated, and discussed this in great detail. We are going to fight for our daughter. We are going to play it cool and see what this Dr. has to say. If he does not make us at ease, we will do what have to do to have our daughter born at UCSF. Our biggest concern is that Kaiser doesn't have ECMO machines, and our Dr. also mentioned the possibility of Nayeli being transferred from one hospital to another if she needs ECMO and when she is stable for surgery repair. This is unacceptable to us and we know from our research this is very dangerous for Nayeli. We are praying that we this appt. goes well and that we are told we can deliver Nayeli at UCSF.

We will keep everyone posted and thanks again for all of your support and prayers.

Baby Shower in L.A.

My parents wanted to have a Coed baby shower for us. We decided to have it on Saturday, July 26th at the 94th Aero Squadron Restaurant. Shane and I flew down on Friday and were excited about Saturday. I had a few moments on Friday, I couldn't stop crying. I prayed I wouldn't be like this at the Baby Shower. My sister in law took care of the decorations, favors, and games. We walked in the room and we loved all of the decorations. Shane and I took alot of pictures. My friends started arriving. I was so happy the entire time and Shane had a great time. We played games and opened presents. There was one game that really touched my heart. My sister in law had everyone draw with markers on onesies. Shane announced our baby's name and everyone started to write heartwarming things on the onesies with Nayeli's name. We decided to wait on telling everyone about Nayeli's CDH. My parents and bestfriend are the only ones that knew that day. We had a wonerful time and enjoyed the day! When we got to my parent's house and I saw all the gifts in the living room along with balloons, I was so emothional. I started to cry and sobbed. I couldn't stop. I told Nayeli that she needs to fight this CDH battle and rubbed my belly and just cried. My husband and I continue to pray and have faith in God. We drove back home on Sunday and listened to christian music the entire way home.

We want to thank everyone for their continued support and prayers.