Thursday, October 11, 2012

Sleeping in Jersey tonight

This week has been a whirlwind....literally...we have been running. Yesterday we went to Charlotte and met with Dr. Courtney Stephensen with maternal-fetal care specialists and Levine hospital. We really loved her. She felt that all the appropriate tests had been run thus far, and agreed with the fact that we do not yet have a cause. She let us know that she would spare us the "gloom and doom" speech because it was clear we had already heard it, and that we seemed to be pretty knowledgeable about the statistics and diagnosis.
What she was able to do, which is what we appreciated so much, was to discuss the if this then that scenarios. We talked about what happens if we make it to delivery. She actually disagreed with Csectioning being the best option as a vaginal delivery can often expel fluid, and is safest if possible. She said she would recommend measuring his abdomen and if it is larger than his head at time of delivery, she could draw some fluid off of his belly right before we induce labor.
She felt that our tertiary care center in Greenville is as good as the one in Charlotte, but did recommend us meeting with a neonatologist as soon as possible to get established in the event we spend time in NICU. She also felt that the later he is born the better, and felt that we should not try to induce unless me or the baby shows clear distress.
The best information she was able to give us was about the hydrops itself. We have not had a good understanding on what about the hydrops was actually deadly. I felt that if the fluid started getting worse and compressed his heart, that is when he would die in utero, vs the fluid staying the same and his lungs being undeveloped, thus having his die shortly after birth. She did not seem to feel that the fluid itself, as it stands, would kill him, unless it does indeed worsen. She said that even after birth, lungs can be quite flexible and that you do not need full capacity for survival, thus feeling that even not fully developed at birth could likely be reversed. Her concerns were primarily the underlying cause for the fluid. The fact that it is unidentified and effecting both lungs and abdomen, could indicate a significant unidentified cause, such as something metabolic, etc. Unfortunately, I had already discussed metabolic testing with our genetic counselor, and she told me that due to the lack of clear fetal values, they had stopped running them at the genetic centers. Dr. Stephensen said that this underlying cause is what could kill the baby at any time. It may, it may not, but no one knows because we don't know what it is. It could be metabolic, it could be a type of infection they don't know to identify, etc.
She spoke highly of Children's Hospital of Philadelphia (CHOP) and felt that they have great scientitists and doctors and have some cutting edge techniques. She did not feel that she could give a rational reason to draw fluid of chest due to the fact it is also in abdomen, but did state that if CHOP advised it, she could certainly proceed and help us under their protocols. She apparently has a lot of experience with these procedures, and was also able to explain how they work and ease our mind a little on what could be involved.
She also let us know that she would like to keep following the baby and that since she would be the consistent person doing and looking at our scans, that she would be able to gauge if the fluid were worsening, improving or staying stable. I think this has been difficult in the past because we have not seen the same maternal fetal doctor in Greenville at any of our visits.
I believe we will be seeing her in Charlotte approximately every two weeks for monitoring and then of course, whenever needed based on CHOPs recommendations.
Mickey and I both felt at ease with her and felt that she understood where we were coming from and would work with us so that we would either have baby Auguste as healthy as possible, or have peace of mind with the outcome.
My mother drove in from FL yesterday and therefore last night we had a busy night. The kids are so excited she is here, they actually want us to be gone til Sunday vs Saturday for an extra day with her. even Emily followed suit and just trusted her immediately. I feel at peace knowing she is with the kids because I trust her and so do they. This morning she drove the kids to school, with me, so we could show her where their classrooms were etc. She just loves the kids school (as do we), because everyone is so friendly and involved, from parents to teachers.
Mickey went and got the oil changed on my mom's car. Since she can't fit three car seats in the back of her car, we traded and Mickey and I got to drive her Mercedes to Philadelphia. Talk about a nice ride. I actually feel a bit out of character because it is too fancy. haha
We drove up today and it was such a lovely drive. The entire trip through NC, to VA, and through Maryland was just beautiful. The leaves were changing and the farms smelled of fresh baled hay. We kept the sunroof open and played the Sirius radio, and we really enjoyed ourselves.
We took our time and had a nice big lunch and stopped again at Cracker Barrel for dessert at around 5p.  It wasn't until we got into Jersey (where our hotel is), when the traffic started getting a bit crazy and roads confusing. It didn't help that we happened to be listening to the VP debates during that time, haha
We are settled into our hotel now. It is actually across the line from Philly, and they gave us an excellent rate due to being here to go to CHOP (yes, the people at CHOP are very accommodating which has made this a very easy trip).
The hotel is nice and has free parking and free WI-FI, which if you know me well, you know that not having these two things in a hotel accommodation are maddening to me.
Mickey is already snoring. I should be getting that way as tomorrow is slam packed with stuff going on at CHOP. We have to be there by 7am, and they said to expect a 30 minute drive for traffic. Everything will take place in the SDU (Special Delivery Unit), and they said they would have some muffins and fruit. We have another ultrasound at 0730, we have an MRI at 1030 (this is one of the offerings none of the other facilities could offer and will possibly give us some better views), we have another ECHO @1330, and we meet with the doctor at 1500 (excuse military time but I am a nurse, ha). They said we won't be leaving til after 1600 (4pm). We chose to drive because it is possible they will be done with us then, or they could quite possibly want to schedule a procedure or something over the weekend. The one thing we will know after leaving here is that we have talked to the leading specialists regarding this condition. They have published and done research on it and they have successfully done interventions which seem to have increased the odds of survival significantly. This is why we are here and what we want to explore with them, even though we understand that it is possible, our Auguste will not be a candidate for any of this. But without coming here and bringing him here, we would never know.
I feel blessed to have this opportunity.

We are still hopeful and we remain faithful. About a week ago a lady posted on the fetal hydrops support page on facebook that her daughter was diagnosed with hydrops at 14 weeks, she was now 18 weeks, and that her doctors were urging her to terminate due to the risk of mirror syndrome (which is a condition that can sometimes cause the mother similar symptoms to the baby). I didn't respond to her post at that time because this is a personal decision and I didn't feel my two cents were needed which she was already facing such a difficult decision. She posted last night that she decided to follow doctors orders and was in the exam room waiting for the doctor and looking at the tools he had on the table, and she just decided she could not do it. The doctor didn't understand and she told him it felt too much like an abortion and she just would not have closure. He told her it was not an abortion if the baby was already dead, and put a doppler to her, at which point her baby girl had a nice loud heartbeat.
She is not unrealistic, she said she really didn't know how long the baby would hold out and understood that there may come a time where even her own life is put at risk, but that she wanted to let nature and God have a part in the plan. I was so happy by this. Because the truth is...this is how Mickey and I feel. We don't know how it will all turn out, but we are trying to enjoy every bit of being Auguste's parents. Every reassuring kick, every time we hear his heart beat or see his beautiful face on ultrasound....they are moments we have with him. I am not going to say it won't be dreadful to lose him, but I am learning to be thankful for each day. I hope to have years and years to come, but I am thankful for each day. I am thankful for each moment that I get to experience being his mother. Each tear we shed, each moment we share, they are out of a deep and unfaltering love that we have for our child. Our son, Auguste.
This has even brought us closer as a couple and family. We are so committed to each other and making these decisions together, and I know that at least I have developed an even deeper admiration for the character of my husband. His willingness to stay right by my side and take equal partnership in decisions we make for Auguste. Because he loves him, just as I do. He is such an admirable father and puts them all first, all the time.
I feel that Mickey and I have been challenged by not just using words to say what we believe, but actually having to take action. It is so easy to think you know right where you stand on things, and then having to actually be tested by being in a situation. I have felt affirmed that we stand together on these issues and that affirmation, although putting us in a potentially painful situation, and certainly a challenging one, both emotionally and financially, has been reassuring and I believe has made us stronger as a couple. We respect each other and we respect family, we respect life and we even respect death as an extension of life. We respect it as a beautiful part of the human condition. We also respect the bigger part that we don't understand, and through all of this, I think have started to deal on a very personal level the fact that we can't control everything, and  that things may not turn out how we desire or pray that they will, BUT that things can make sense even when we don't fully understand them.
That is faith! That is hope!
I don't know how I will feel tomorrow, but the past few days I have shed less tears and I truly believe it is because I have found a sense of peace. "it is well, with my soul". I don't know how it will turn out but I am finding that no matter how it turns out, it will change me only in that it makes me stronger and more faithful in the great mystery that is God.

Please pray for our guidance and the wisdom of the doctors to help us make sound decisions that will be the best possible thing for Auguste.


  1. Thinking of you and Auguste this morning. <3 Good luck with your appointments at CHOP. I hope you get some good news. (((Big hugs!))

  2. I am inspired by and grateful for the way you are caring for Auguste and for each other. It is true, Love knows no bounds. Continuing to imagine wisdom and deep compassion for you all and for your healthcare practitioners. Love you!

  3. Great news! Can't wait to hear about your Philly visit too! Love:)