Yesterday went really well! We left for Nashville at 7:05. It usually takes right at an hour, and our appointment was scheduled for 8:30. We failed to consider school being back in session and were still 10 minutes late. This made me a bit nervous considering we were an hour late for our last appointment because of my mixing up the times on my calendar.
My mom and Mike went with us. I found out they like laughing too early in the morning. Laughter following morning conversation should not be allowed until around 10ish. Actually it did make for a lighter mood, although our “party” was asked to leave the waiting area after you are weighed in and move back out to the bigger waiting area.
We were a little loud I guess. Maybe it was that we made fast friends with two ladies, who had just met, yet were both from Bowling Green. One was about to burst at 33 weeks with a set of twin girls. Bless her poor heart, she looked miserable. One of her twins hadn’t grown since her last visit but the other had. They were just trying to keep the babies in as long as possible. If you think of her, please say a little prayer. The other was a young women, who, after going through fertility drugs and having twins boys three years ago, was told she could never have babies again. Yet, there she sat next to me, 23 weeks pregnant with a little healthy girl. She was a little nervous about her surprise girl, but mom was reassuring her girls were “harder”, but “worth it”. We all had a laugh about that. (Any of you who know me well can laugh too!) The discerning young woman said, “But look, your still here, with her now.” So true. Love you mama! But, apparently there are a few nurses who agree with me about the laughter before 10 am rule so mom and Mike got the boot.
We had a new ultra sound technician this time. Her name was Laura and she had an interesting accent which spurred us to ask her where she was from. She said she was from Zimbabwa, Africa. She wondered aloud, “Does that make me African American?” She was Caucasian, so this made us all snicker, which was fine, because by now, it was after 10:00. She was very good at explaining what she was doing as she went, although she didn’t look as long and measure as much as the others have. I’m not sure if this was because they were a little busier than usual, or because Haddie Joy had her feet bent over in front of her face, as though she were sucking on one of her big toes. Very cute.
As the ultra sound continued, Peter and I both recognized right off that the swelling did not appear to be as bad as before. We could still see the cystic hygroma, but it didn’t seem as pronounced as before either.
When we met with Dr. Collins he explained that her swelling had indeed gone down and that there also appeared to be less fluid around her heart and lungs. As he was talking he began to describe the cystic hygroma at the back of the neck mostly, where as before it seemed to be not only on the back of the neck, but up around the the top of the cranium as well. All of these things he admitted were little bits of good news. Because of his experience, and all of the unknowns, he couldn’t in good conscience change the prognosis, but still he believed that it was encouraging to see the changes.
I couldn’t help but feel excited. I know these were miracles and we are just thankful to have been a part of them. We talked over a few things with the doctor. I asked him a few questions. One of which was about Haddie Joy’s frequent movement. When I say frequent, I mean there have been several minutes, probably an hour, in which she is constantly in motion, never stopping. This concerned me a little, because I never felt Shaylea moving like that. But he assured us that this was another little bit of good news. It would be more cause for concern if she weren’t moving much. We talked more about the chromosome testing which will be of immediate importance after birth. This will be a quick drawing of cord blood or blood and will take around 24 hours to receive results. Overall he said she isn’t out of the woods yet, but what he saw, compared with last time was good.
We then called Andrea and she met us over in another building and escorted us to meet with Dr. Rojas, the neonatal pediatrician. This was a breath of fresh air after spending the morning in a bit of a rushed office. He made room for all four of us in his small office and he just talked to us like old friends. It was so so encouraging. He presented what he understood about the situation in a format that allowed us to mainly just listen and soak in all of the information. It was so refreshing to not have to ask all the questions. Somehow he made the hard stuff easy. He didn’t rush and was very personable. Informative, yet gentle. He explained some of the differences in what we might expect from the results of the chromosome testing. Two of which we were already aware of, the Turner Syndrome and Downs Syndrome. Both of these syndromes resulting from chromosomal abnormalities are not always fatal, although coupled with other medical problems can be. He mentioned two other Trisomy’s (can’t remember #’s) both of which are fatal. One other he mentioned was Noonan’s Syndrome, which is like a male version of Turner’s syndrome and obviously wouldn’t be a what Haddie Joy has since she is a girl. He talked to us about types of cystic hygromas, and their possible removals. We talked about making a baby comfortable when it becomes obvious there is nothing they can do. With Haddie Joy’s symptoms being a little better, this part of the conversation wasn’t as hard as it might have been. He shared with us the story of his firstborn, who they took home to enjoy for the three months he lived. He still, after all of these years, couldn’t speak of him without emotion. It was the only time all day my eyes welled up with tears. I feel like we could be in no better hands, medically. And we already know whose Hands are holding this entire situation, and there is great comfort in that. I just had such a peace after leaving his office.
Andrea then took us to tour the labor/delivery and postpartum floors. She also showed us the neonatal unit and the floor I would be on if I have to spend anytime in the hospital prior to giving birth. I couldn’t find my way around to save my life, but everyone everywhere was so friendly and get this….happy. It was such a nice environment. I take great comfort in knowing that I, and our family, will be in good hands when the time comes.
There was a mix up with Hospice, and I didn’t get to meet with them. But Andrea took care of the phone call for me, and Tisha with Hospice called me back within the hour. Tisha was so sweet. I learned that Hopsice will sort of help us along, suggesting to us what action to take when. They act as a sort of time line, letting me know what our options will be and when. This is a huge comfort to me. Just knowing I can focus on my health and family and not worry about the logistics of everything. When Tisha called me, she was so excited to find out it was a girl and Haddie Joy was her name. She loved it. I thought that was so sweet.
Before we left Andrea actually walked us back out to the parking garage, I gave her a big hug and thanked her. She is such a wonderful, caring lady. She proceeded to tell us that Dr. Rojas had delivered her! It’s just like they are a big family. We all left feeling so good about the day. We went to the van and prayed, thanking God for all the people we had met with and all the news we had received.
Then mom and Mike took Peter and I out to lunch at Red Robin’s.
Where else can you get an onion rings like this?
So there I sat, soaking in the good report and devouring onion rings with some of my favorite people in the world.
It was such a nice day.
Peter had prayed before we left yesterday morning, that God’s will be done, but that we would somehow have news that would give us hope. Prayer answered. Thank you Jesus for listening to us. You are so good.
I came home and my sweet sister-n-law had supper for us. She is due to have a baby girl in about 2 and 1/2 weeks, just moved and has boxes everywhere, yet still found the time to minister to us in this sweet way. I truly couldn’t have a better family! We’ve enjoyed her food now for the last three meals. None of us are complaining, she is a fabulous cook!
I’m so thankful to all of you and your loving prayers and support. I am so unworthy of such love and so undeserving. I’m so thankful that God has put each one of you in my life as a prayer warrior. May God richly bless you today for what you are doing and how you are such an important part of how He is using Haddie Joy and her life. God Bless you.
Just as we thanked God for hard news, let us praise Him together for the encouraging news we received yesterday!
PS – I’ll post ultra sound pictures as soon as I get them scanned! 🙂