Wednesday, March 20, 2013
Our baby miracle is 5- 1/2 weeks old. I went to my 6 week check up and got to show off this perfect beautiful baby boy. Before my appointment I went upstairs to my maternal fetal doctors. I didn't have an appointment but both Dr. Nathalapaty and the genetic counselor were there. We discussed Auggie, his miraculous recovery, his hand, his heart...
It is a lot of fun talking with people who have never seen a living breathing hydrops survivor...to see the awe in their eyes and see them experience for a second what I experience each time I look at him.
Dr. Nathalapaty asked sincerely what I would suggest as far as my experience and how they can improve. I was grateful he asked. I, of course, have thought through this a lot. He asked if they should be less grim. I don't know. I think being realistic is important and I know that Auggie is certainly NOT the norm. However, now that they have seen miraculous recovery, they could give statistics, but remind patients that there is indeed hope.
I thought about research. I think it is hard to advocate for research on hydrops, mainly due to hydrops being a symptom is many different diagnosis. However, I do think more research regarding interventions for hydrops is important.
I told Dr. Nathalapaty that if I could help with one change, it would be for appropriate referrals. I feel that we had to ask for referral, and even then, the referral was to Charlotte, and although Dr. Stephensen was a wonderful doctor, she was not in the position to do anything for our baby either.
As you may recall, the standard of care for a baby with hydrops is termination, or do nothing and wait for baby to die.
I advocated that they refer to facilities in the position to do something about fetal pleural effusions, or hydrops. Referral to fetal interventionalists that actually do shunts and consider them in hydropic babies. Dr. Nathalapaty asked if I knew of more facilities, and I have been compiling a list which I plan to get together for him.
The genetic counselor, Jennifer, asked if I would be open to speaking with other parents, and I of course eagerly said Yes. I may not know everything, but since being part of a great support group, I certainly can help find answers.
Some of the girls in our group are currently writing information regarding carrying a baby despite a fatal diagnosis. It is going to be amazing to see it put together. It is difficult carrying a baby with the knowledge that you will likely not be taking them home. I still get teary each time someone gets a new diagnosis or each time someone mentions the hour or day that their baby lived. The beautiful hour I imagined having with my Auguste. My entire pregnancy, preparing each day for meeting him and saying goodbye to him at the same time. But knowing that no matter what happened, that our love for him would not change, and that any amount of time, from the next kick to the first breath...would be worth having with him. Because in truth, we will all die...and witholding love due to the risk of heartbreak is a ridiculous notion and with only leave you with emptiness. Every moment spent loving is worthwhile and rich. We get no guarantees and just have to make a decision. Unconditional Love.
After my doctors appt., I went to our office located in the hospital, and then the office across the street, where I do most of my work. It was so lovely seeing all my co-workers and letting them finally meet Auguste face to face.
We reminisced a bit about when I took the nurses and medical assistants aside and let them know that I had decided to carry this baby, but that likely we would not get to keep him, and how I needed their prayers, and I preferred no showers or preparation for bringing him home, but that I wanted them to treat me normal, and be happy for the happy moments with me and understand when I needed to cry. They were all so wonderful. For several weeks, before I took leave, we did just that. I pretty much went into the bathroom to cry between each patient appointment.
Cheryl reminded me of when she and Jennifer and I went into the pharmacy and cried and prayed for Auguste, and also for peace.
We cried again today. Cried as we held him and all of those emotions came flooding back and how we held this perfect little miracle. Markalena, a co-worker from upstairs, prayed with us again today, holding Auggie's little hand, and at the end of her prayer, she prayed for the wonderful man he will one day become.
It is a little stressful and beautiful at the same time to realize that I am raising a man. Another co-worker came by and said "Auggie, you are so beautiful...you know, you might marry my daughter some day?"...
it's true, he might. I reminded her that I have two sons...
Oliver said his prayers tonight. He spent so many months praying only for "Baby Auggie to get better", that he always feels he needs to add something about the baby. Tonight he ended his prayer with "Please let Baby Auggie have a warm heart". So so sweet. Lots of prayers for Auggie...no longer for him to live, but for him to live a life full of love and integrity.
it all reminded me that I am raising two future husbands and two future wives....all the more reason to let them see us kiss, let them see us pray, let them hear us laugh, let them hear us sing, let them feel our love each moment.