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.


Vicki Jensen said...

If it gives you some peace of mind, my doc also stopped doing LHRs towards the end. He still did the biophysical ultrasounds so he could gauge how things were going but I think they get an idea how severe the defect is. When they stopped doing the LHR for me I just focused on watching the baby take practice breaths. You're also getting to the point where they can start doing the 3D u/s. That is really awesome.

Glad to hear all your appts went well and that Nayeli continues to grow well.

mom to Jack

FaithCDH said...

We also stopped getting the LHR numbers later on, though I understand how its "positive fuel" I agree!

Continuing to keep you in our thoughts and prayers! Go baby Nayeli!

Elizabeth said...

You are very welcome and thank you for sharing your Nayeli. I love her name! LHR are an indicator but I have read that it can fluctuate and truly - Vicki is so right - focus on her. Numbers are just that!

I also agree the 3D ultrasounds are awesome!

With thought, prayers and LUNG FUNCTION chants!

PS Tell UCSF that LUNG FUNCTION chants are the best indicator! ;-)

Terri said...

Liz it is my honor. I feel good that I can help in any way. This is a very hard ride and one I wish you never knew. Hoever I know that God has a plan for you, Shane and sweet Nayeli. She is a gift from the Most High God.

I wished we lived closer. I am just glad we met. You are stronger than you know. God bless you.