I would like to start this post by saying thank you to everyone. We have been so blessed to have so many people show support and love to us through this difficult time. When I was concerned about child care, I actually had friends from both FL and OH offer to come down at any time and help out. My sweet friend Kathy gave me a devotional, and my friend Jerry did as well, both of which have been very helpful to me each morning when starting our day. My mom and step dad have been so wonderful in making the trip up multiple times already to assist us. My friends from work collected money to help us with this trip, with I am so humbled and grateful for. I need to post photos of his beautiful quilt, my friend April and I were planning it prior to this hydrops knowledge, and she worked on it despite his prognosis and I feel confident he will also enjoy it. There is a silhouette on the back of it of a boy holding his arms to the sky, and it felt like foreshadowing to me. I received this necklace from Jerry as well, that keeps all four of my children close to my heart throughout the day in a very tangible way:
and I received this beautiful picture from one of my closest friends from college, Arlene:
I can't wait to frame in in Auguste's room. Countless others are offering prayers and support to us in so many ways and I am not sure I will ever be able to truly let them know how much it means to us.
Yesterday we made the long drive to Philadelphia again. The drive was once again beautiful. This time was a bit different because we brought sweet Buttercup with us. Pa Ken came to SC to watch the older two and keep them in school, but we decided to bring Em with us. She was quite the trooper. She was sweet as pie the entire 12 hour drive! We made it to Cherry Hill, NJ around 10 pm and were sacked and asleep pretty quickly. We are fortunate because the hotel we have been staying in is in Cherry Hill, NJ, but only a half hour commute to the hospital. They give us a special rate of $55 a night since we are here for the hospital. I actually plan to be here for a little while, but Mickey and Em are going to head back to SC on Saturday so that the daily SC life can keep on going. After he leaves I will be staying with a college friend, Beth Johnson DeWet. We actually roomed together for several weeks in a little town in Nicaragua, so I think she knows that she doesn't need to go out of her way to entertain me. I am pretty easy going. I told her that since I had seen her kill a roach with her palm in a sleeping bag with no air conditioning and a mosquito net, that there was little she needed to do to be a better condition than our past shared space. I am so grateful she is letting me stay with her and her family, as this will make a huge difference financially as well as emotionally. I will miss my family so much, and I hope it is only a few days, but could be a bit longer. I just really hope to be home by Halloween.
Today we went to the hospital, SDU (Special Delivery Unit) where they know us by name. Once again we really could not imagine getting better care and bedside manner from everyone starting at the front desk to the doctors. Everyone is so gentle, kind and personable.
After our Ultrasound we met with a doctor named Dr. Julie Moldenhauer. She was very nice. She said that once again, she only felt that the fluid on his chest was "moderate". She said his heart was still in the correct position and that his lungs were not at all flattened by the fluid. She said she certainly had seen much worse in terms of hydrops and that she would not put us in the "dismal" category, but that unfortunately, hydrops is never good. She did feel that it appeared the ascites (fluid on abdomen) may be a little worse, and that overall, she felt that drawing fluid off his chest may improve the abdomen. She said we did not need to do it today, but would need to do it in the future. We talked about lung development and risk and benefit. She felt that she could do the thoracentesis safely and we decided that we would proceed.
She got everything set up and even brought crackers, milk, and markers to Emily so she would be entertained and Mickey could stay in the room with us. The sonographer started checking Auggie's position and that little booger had balled himself in the very corner of my uterus and they had to let me take a walk around the unit and dance around a little to get him in a better position. At this point, Dr. Moldenhauer was called to the OR, so Dr. Martinez-Poyer came in to do the procedure. Initially, Auggie was in a perfect position and we got started. The procedure is very similar to an amniocentesis and they make one swift pass through my abdomen, and then my uterus, and into the baby to draw off fluid. The amniocentesis I got was definitely uncomfortable, but do-able. When Dr. Martinez-Poyer started the thoracentesis, I was surprised that other than some slight cramping, it wasn't so bad at all. However, Auguste immediately shifted making it difficult to get in his chest without going through the placenta. He tried to shift position and this certainly had my nerves shot and I was sweating up a storm, but it really wasn't too painful. The doctor said that it wasn't working and they would need to put another needle in. This time, he had to insert the needle laterally, and I must say that I felt the pain was pretty excruciating. Mickey said I cried (I didn't), but I did cry out and apparently at some point said I wasn't sure I could take anymore. The doctor explained that when the insert laterally they hit a lot more tissue, etc. Fortunately, Dr. Martinez-Poyer was unfazed by my pain and got the job done. They were able to pull some clear fluid off of Auggie's chest. I do not know if this is good or bad but he did mention that a baby they did yesterday had bloody drainage. Because of the pain, I was unable to watch the procedure on the screen, but Mickey said it went smooth and you could see them empty the entire left chest. Afterward, as we were checking his heart rate (which didn't raise a bit and stayed a steady 149)we could see that the left chest looked just as it should with no fluid. There was still a good bit on the right, but we had decided that for today, we would only draw from one side. The plan is to return Tuesday for another ultrasound. At that point we can see if the fluid is better and perhaps evened out from the right side, if it is still clear on left and still on right, or returned. At that point we can decide whether to do another thoracentesis, or to place a shunt to have continuous drainage. Each time we do this, there is a 1-3% chance of putting me into early labor, so that makes me a little nervous. However, so far so good.
I am still in a little pain, but I don't really like taking even Tylenol unless absolutely necessary. I have been trying to just take it easy.
They said they should know if it is chylothorax fluid by today or tomorrow and that they would call us if positive. I am not sure if that would be good or not, but, so far we have not heard from them.
Overall, I am encouraged. I just feel like we did the right thing. I truly am impressed by this team of doctors and CHOP as a whole, and feel that if anyone if going to change the "standard of care" for all of these poor babies, it will be them.
We did go to downtown Philadelphia and checked out the Museum of Art. It is truly a beautiful city. We ate tortellini in the museum cafeteria and then looked at some pretty amazing art including from Auggie's namesakes, Auguste Rodin and Pierre-Auguste Renoir, as well as Monet and Picasso, etc. I really loved the shaker furniture, etc. We didn't stay long because I was feeling sore and Emily was getting a bit roudy, but our tickets were good for two days and also include the Rodin museum, so we will probably go back tomorrow. My friend Jean is in town for a conference and we are going to try to see her and finally meet her fiance Paul.
Mickey and Emily also got to run the famous "Rocky stairs", Mickey believes this is a true piece of Americana, so it had to be done. Sillies!
I have added some photos of some of those fun things.
I have been trying to trust God even in the little moments, and to stop having so much anxiety about what tomorrow may hold, and instead take all this one moment at a time. Breathing in and out and focusing on the present. Now I lay here and even though a little sore, I am grateful to feel the pain and also for being able to feel Auguste kicking around inside me. Even though his little active restlessness make procedures more difficult, I know that his activity is a positive sign for him and I am grateful for it. I listen to Emily in the other bed, singing Twinkle Twinkle and doing anything to keep from falling asleep, I think of my sweet babies who are snug in their beds in SC, and I am so grateful for all that has been given to me in this life.