Tuesday, October 23, 2012

Warm and Fuzzy

This morning I woke early and prayed. I prayed for guidance and sound information from the doctors, I prayed for peace of mind for Mickey and I, and I prayed for healing for Auguste.
Beth and I drove into Philadelphia and she accompanied me to my visit. The sonographer who was with me during the thoracentesis last week was the one scanning me today. I felt a bit discouraged because I could definitely see that there was fluid on the left chest again, and that the fluid on the right was still more. I didn't know if this meant it was coming back or not. The abdomen also continued to have fluid, but seemed about the same. When the sonographer left to get Dr. Johnson (the fourth doctor in the group and the only one I was yet to meet), I began crying. I had hoped not to see any fluid on the left chest. I was concerned due to not knowing Dr. Johnson and not knowing if he was aggressive or if he was reactive, etc, even though we had been assured that he was one of the first members of this group, that he had been up to date on us personally and that the other doctors had talked with him regarding every decision made thus far.
Beth could see how upset I was and she commented on how active he was, and she held my hand and she said "so often we talk about things more than we pray about them, so lets pray". And we did.

Dr. Johnson entered and we got Mickey on speaker phone so he could be part of the discussion. The doctor looked at the fluid and said that he did not feel that a shunt was warranted at this time. He said he did not feel that the fluid had re accumulated  but rather, was redistributing from the right side. He said he would consider the right chest to be "mild to moderate" pleural effusion and the left to be a "mild" effusion. He had no concerns about the abdomen. He said the fluid drawn off the chest last week had 85% lymphocytes, which is consistent with being chylothorax, which can happen for multiple reasons, but explains our problem and gives us better information to move forward as far as interventions. He said he has seen many babies with chylothorax with this "mild" amount of fluid go forward to delivery and do just fine. He said sometimes it resolves after birth but if there is fluid when he delivers, he will need a chest tube for a bit. But he did not worry about lung development as long as the effusions remain mild and that pulmonary hypoplasia was less of a concern if it remains as it is. He said that often times, the fluid will continue to resolve in utero, and sometimes never return, but that you have to watch closely, as it can often return unexpectedly and with a vengeance.
He mentioned that there was still a lot of perplexing things about Auguste, since they could not quite understand why he has not yet gotten much worse, but that his presentation today frankly made him feel "warm and fuzzy inside".
Yes, warm and fuzzy were his exact words and I can only interpret that as a positive expression!!!!

He would like to see me on Thursday morning and again Tuesday morning. The do the shunts on Tuesday and Thursday and he wants to be prepared to do them if they see fluid worsening, but if we go on these days and the fluid is the same or better, that I will be able to go home and get monitored very closely in Charlotte. He said that if at any point the fluid worsens, then "back to Yankee land you go" (his words, never mine).

I did forget to ask him several questions, including if we would still plan to do a very early delivery with this new knowledge. I need to write it all down to ask on Thursday morning. It still seems they would want me to deliver with them and see them regularly  but it will be nice if I can go home next Tuesday and perhaps be home in time for Halloween.

I feel good. I feel that as long as they do not have to invade my uterus and he continues to improve, that is positive and least amount of risk. I feel good that we have an idea of what we are dealing with, even though still unpredictable. I feel good that we are following so closely, that surprises are less likely and we are less likely to be blind sighted by bad news (I think).
I have been trying to do my research. It seems the only way chylothorax can be diagnosed is from thoracentesis and thus it surprises me that it is not part of standard of care. I read this article (among others) which outlines some shunting facts. It touches on stories such as mine where the fluid did not get bad enough to shunt or improved, but since it was a shunt case study, it didn't give me the data or statistics on those cases, however, the reason I am sharing it isdue to the last line. It says that regardless, that anyone diagnosed with hydrops and pleural effusions should be referred to a center that does shunts. As you know from previous threads, these centers are few and far between, and even in our case, we had to do our own research and ask for our referral and call CHOP ourselves. If anyone is reading this who is also experiencing this, please advocate for yourself and your baby, because it seems to improve the chances of at least 50% of the babies diagnosed.

I do not know how this new knowledge improves Auggies's chances statistically, but Mickey reminded me that it doesn't matter and that today, everything is good, and improved from last week. I continue to feel the little guy kick (he is currently dancing on my bladder), and that today, we believe we are going to get the miracle we have been seeking.

After the visit, Beth and I walked across the street and got huge kielbasas from a street stand. We washed them down with orange sodas and it was an excellent treat. Beth truly felt even more encouraged than I did by the visit, as I think I get distracted by all the things I now need to absorb and learn about chylothorax (because I am obsessive like that). Beth also profoundly touched upon how perplexed the doctor was that Auggie wasn't getting worse and reminded me that we have two things going for us...a great team of doctors, and a Great Physician upstairs, who can perform miracles and do perplexing things!

Once again I got to skype with my family...and once again they were just wonderful and I miss them so much. I am happy that I will very likely be able to hug their necks and kiss their cheeks in a week, and that we are doing everything possible to do the same for Auguste very soon as well.


  1. You know as well as any nurse does, that "Warm and Fuzzy" speaks volumes. Take it for what it is. See the good. Be in that moment, if only for a moment. We pray for you and Auguste and your family daily. Sometimes multiple times a day. God is Good! Sending you Hugs!

  2. I am so excited for you and Auguste!! I know there is still along road ahead, but Chylothorax is definitely one of the "better" causes. So many of the surviving babies were diagnosed with Chylothorax. And it is SO great that the fluid isn't getting rapidly worse.
    It sounds like things are going really well for you at CHOP. I'm so glad you found your way to them, and that Auguste is such a fighter!

  3. Katie, you are one of the reasons we found our way to them. My husband and I were just talking about your blog because he feels that some people reading my blog would not be able to readily find the information they needed regarding hydrops due to all of my emotional stuff...and we talked about how your blog has the hydrops tab. Because in truth, there is a lot of knowledge out there and these babies are not advocated for. In fact, we had a termination discussion and neer got a referral discussion and had to do all of that leg work ourselves...which is a message that is important to get across. Your website does a good job of that I think.

  4. Problems are really a part of our lives, whether we like it or not, it's there. But how we deal with it is what matters most. Just remember, God won't give us a problem we can't conquer. He is also our great healer. Lift up everything to Him and nothing is impossible. Best greetings from an ultrasound technician