Yesterday was Carsyn's 15 month-day. I had a doctors appointment in Lansing with my specialist and Blaine had left on Wednesday for Arkansas for Indoor Nationals. I left Carsyn with a babysitter at home and went to my appointment. We had an ultrasound scheduled to look at Kennedy's growth and check on her. This has been one of the first appointments I have had to go to on my own without Blaine, and I was trying my best to stay relaxed which I was doing pretty well until the ultrasound tech came back in and said my doctor wanted a biophysical exam (ultrasound looking at baby's movement and practice breathing) done. In the middle of that, my doctor came in. She told me she saw some fluid in Kennedy's abdomen, which is one of the first signs of heart failure. My worst nightmare had just occurred. She asked me to head straight to Ann Arbor and go to triage where I would get monitored and see my doctors at Mott's and hope they can figure out what is going on.
Leaving the doctors office was one of the most trying times I have had to endure alone along this whole process. I wasn't sure what Blaine was doing and I was so scared he wouldn't be able to talk to me. I didn't know what to do about Carsyn and Izzy, and I didn't want to go home first because I didn't want to upset either of the two girls coming home and having to leave again. Of course I was a crying mess. Blaine finally answered his phone and he did all the phone calls and figuring out who will watch Carsyn and let the dog out, etc. all from Arkansas as I got on the road straight to Ann Arbor.
No one was quite ready for my arrival once I reached the hospital. The doctors hadn't communicated with the support staff very well, but I got a triage room and got everything ready to roll. I wasn't quite sure what I was expecting, because I wasn't told very much either. Blaine's brother, Blake, met me at the hospital and stayed with me all evening. Blaine had decided that he needed to be here, as we didn't know what we were facing at the time, although we did know Hydrops is a very serious and life threatening condition. He called his travel agent and there was a flight he could get out on was in 2 hours, so he immediately headed to the airport to come home. I met with another one of the MFM team. He did an ultrasound to get some pictures for their team and to send to the cardiologists so they could determine how urgent the situation was. He found some other edema, or swelling, under Kennedy's scalp also, which I was not sure how to feel at that point, just because it was located on her head and I didn't know how serious it would be. He told me the cardiology team and the high risk MFM decided that we could wait until the next morning to regroup and take another look. Of course I had to wait all night for any sort of answer, and I was scared, but at least Blaine was on his way. I was glad knowing someone was taking care of Carsyn and I had someone to let the dog out. My in-laws were on their way to our house to stay with Izzy and would get Carsyn in the morning, as I didn't know how long I would be staying here in the hospital, or what we would be facing next. Blake stayed at the hospital with me until he had to go pick Blaine up from the Detroit Airport as he was landing at 11pm.
I had one of the best nurses I have ever had first. She took great care of me the entire time. I was given a steroid shot in the hip to help Kennedy's lungs develop in case they do need to take her earlier than the expected date of April 20. I have never felt anything like that. The needle is never bad, but the feeling that someone kicked me in the hip and the sore and pain in my hip for the next 15-30 minutes was brutal. I sat in my bed until it went away. I had to have some blood drawn too, and was hooked up to the baby monitor to watch Kennedy's heart rate and for contractions. All was well and the best part, I didn't have to keep the monitors on my belly all night, so I could get some good rest. The hardest part of the night was waiting for Blaine to arrive. It felt like an eternity until he got there, and I don't think I've ever been so happy and relieved to see him once he did get there. I was prepared for a long restless night, just from all the anxiety, and most people know how comfortable the hospital beds are, not. We both just sat on my bed for awhile and began watching a movie. We didn't get to sleep until about 2:00am, and our fetal echo was scheduled for 8:00am. The nurse said she would leave us alone for the night so we could get some sleep and would be back before the appointment. I slept pretty well (I think mainly because I was just so exhausted from the emotional day), but woke up around 5:30, and fell back asleep for about 15-20 minutes before a little baby in the hall way woke us both up crying. From there I couldn't fall back asleep. I lay there thinking about Carsyn and how she was doing, and also that I may never get to hear Kennedy cry. It broke my heart all over again. There was so many things running through my mind and I didn't know anything new, besides things have gotten a little worse so quickly, but how much worse really. The nurse thankfully came in a short time later and got my vitals for the morning and told me to get some breakfast before my appointment, as it would probably take quite some time.
The fetal echo came and went. We confirmed the Hydrops and got some good news that there was no fluid around the heart or lungs. One problem left, what is causing this fluid to pool in her belly and scalp. We sat down and discussed the findings and the doctors decided that delivering Kennedy now would not be an option. With her heart condition, and the fluids, on top of being premature was not an option and they wouldn't be able to do much to help her at that point. Their goal now was to send me down to the fetal floor and get a general ultrasound to see if they could see any underlying reasons why there was fluid in her abdomen........the doctors are stumped. There aren't any signs they find where the source is, and at this point there aren't many options other than to try and give me a medication to help her heart pump a little stronger and hope it stalls or improves the fluids. I agreed to take it, as I would do anything possible to give her a chance in this world. The doctor also called for a couple blood labs to see if I had a virus that can be causing the edema and fluid backup. We will be here in the hospital for the rest of the weekend, and will take another look on Monday and hope to see some good results.
How does one prepare themselves to lose a child? How do you prepare yourself to fight so hard and expect her to fight 10 times harder for herself when you know she will already be very sick from her first moment in this world, and possibly even more sick with another life threatening condition that the doctors don't even have any answers to treat it? I never thought in a million years I would ever have to face the thoughts of losing my precious baby, but with all the hope and love in the world, it's not something to completely look past. One of the hardest things is having to face all these doctors and seeing the pain even on their faces because they are doing what they can to help her, but at this point they don't know what to do. The most they can do is to continue giving us our options and praying they work out in our favor. But as most have known, it hasn't exactly worked that way thus far. We are still so optimistic and hopeful that she will make it. Her heart is beating strong and she is growing like a weed, on the larger side of the spectrum which is good, but everything else looks great besides what we already know and now the mystery and unknown of her Hydrops diagnosis.
It will be a long weekend. Long days. Long nights. Just sitting around waiting for Monday to arrive to hopefully see some miracles beginning to work. I will at least get to see and spend some time with Carsyn tomorrow, but being away from home without her is so hard. in 15 months, I have spent every night with her, besides this weekend and the one night before intervention. I've taken her everywhere with me, and I really haven't even gotten away without her much in general.
Thank you everyone for the prayers. We need them more now than ever before. Please pray for her to continue to fight and be strong. To give herself and the doctors just a couple more weeks to give her the best chance possible. For all the doctors involved to find something, anything, to understand why this is happening and for their knowledge and gentle hands as she is brought into this world within the next few short weeks. For our family to stay strong and continue to fight with our precious girl that we love so so much more than she will ever know.
May God bless you all.
